The Importance of Rare Disease Day: Amplifying the Voices of Rare Disease Patients
Emerging Treatments
Health Canada’s new approval
CDA call for patients input
The Connectivity Between ValueBased Healthcare and Patient Advocacy
Diversity, Inclusion, and Equity
The Correlation Between Rare Diseases and Diverse Populations: The Role of Patient Advocacy Mental Health
The Pendulum of Rare Disease
Coping: Navigating Grief, Loss, and Resilience
for Well-Being
to Bounce Back After a Relationship
Advocacy Spotlight
The Role of Patient Advocacy Groups Providing Accommodation Access to Healthcare For Every Canadian: StayWell Suites Charity Patient Journey
Two years post liver transplant: what have I learned Living Well
Clean Eating Tips for Busy People: Nourish Your Body, Elevate Your Energy
of Moving to a
vs. Staying at Home Pediatric
Pediatric Rare Diseases: The Opportunity for Advocacy to Transform Care
Founders Note
Welcome to our 7 Issue of E3 Advocacy. A digital magazine for Patient Advocates and Patient Centricity
TThe next issue of E3 Advocacy will spotlight rare diseases and the power of patient advocacy. It will explore challenges in diagnosis, access to treatments, and the role of advocacy in driving policy change.
We're deeply grateful to our readers for their continued interest and support. Your engagement drives us to bring insightful and valuable content to each issue. By subscribing to Heal Canada Digital Magazine, you'll stay connected with us and gain access to future issues that explore topics that matter to you and the healthcare community. Become a subscriber and visit our website at https://www.healcanada.org to enjoy all benefits.
In each Issue, we have been adding new sections to be inclusive of the entire Healthcare Ecosystem.
We are humbled at the momentum we are gaining with the information to our readers. This digital publication is being read by patient advocates, patients and care partners across the world. To ensure that our global readers feel included in our information, we are rebranding the title of this magazine/journal to E3 Advocacy: Empower, Engage, Educate.
Check out “My Blood My Health,” under the editorial supervision of our Chief Scientific Officer, Brigitte Leonard, for all Bloodrelated issues.
Thank you for being a part of our journey, and welcome to another enlightening issue!
Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.
Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.
Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organization partners. Rare Disease Day provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.
Though Rare Disease Day is patient-led, everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policy makers, industry representatives and the general public, can participate in raising awareness and taking action today for this vulnerable population who require immediate and urgent attention.
By sharing your colours via social media, events, illuminating buildings, monuments and homes, by sharing experiences online and with friends, by calling on policy makers and shining the light on people living with a rare disease, collectively we aim to change and improve lives of the 300 million people worldwide.
This website helps patient organizations, patient advocates, and other interested in campaigning for equity for rare diseases to identify resources and promote campaign events.
This article is reprinted with the kind permission from EURORDIS - Rare Diseases Europe. We are grateful for their generosity in allowing us to share and spread the word on this important topic with our readers. For more details, please visit them at https://www.rarediseaseday.org/what-is-rare-disease-day/
The Importance of Rare Disease Day: Amplifying the Voices of Rare Disease Patients
by Cheryl Petruk, MBA
Rare Disease Day, observed annually on the last day of February, serves as a global platform to raise awareness about rare diseases and the challenges faced by patients and their families. With an estimated 300 million people worldwide affected by rare diseases, this day is an opportunity to shed light on the struggles, advocate for improved healthcare access, and push for increased research and policy changes. By amplifying the voices of rare disease patients, Rare Disease Day fosters a sense of community and drives meaningful action toward better support and treatment options.
UnderstandingRareDiseases
A rare disease is defined differently across various regions. In the United States, a rare disease affects fewerthan 200,000 individuals, while in Europe, it is a condition that affects fewerthan 1in2,000people.Thereareover7,000knownrarediseases,manyofwhicharegenetic,chronic, and life-threatening. Despite their rarity, these diseases collectively impact millions of individualsglobally
In Canada, approximately 1 in 12 individuals over 3 million people are affected by a rare disease,withtwo-thirdsofthesepatientsbeingchildren.medunikcanada.com
The average time to receive an accurate diagnosis ranges from 4 to 8 years, during which patients often experience a "diagnostic odyssey" involving multiple specialists and misdiagnoses.care4rare.ca
Recognizing these challenges, the Canadian government announced the National Strategy for Drugs for Rare Diseases in March 2023, investing up to $15 billion over three years to improve accesstoeffectivetreatmentsandenhanceearlydiagnosisandscreeningforrarediseases
Oneofthegreatestchallengesfacingrarediseasepatientsisthelackofmedicalknowledgeand research. Due to the limited number of cases, rare diseases often receive less attention from pharmaceutical companies and researchers, resulting in delayed diagnoses, limited treatment options, and insufficient healthcare support. Patients and families frequently endure diagnostic odysseys,withsomewaitingyearsbeforereceivinganaccuratediagnosis.
The Importance of Rare Disease Day: Amplifying the Voices of Rare Disease Patients cont'd
TheRoleofRareDiseaseDay
Rare Disease Day plays a crucial role in advocating for better healthcare policies, funding for research, and increased public awareness. The day brings together patients, caregivers, advocacy groups, healthcare professionals, researchers, and policymakerstohighlighttheurgentneeds oftherarediseasecommunity.
RaisingAwareness: Many rare diseases are not well-known, even among healthcare professionals. By increasing awareness, Rare Disease Day encourages early diagnosis and appropriate medical interventions
Advocating for Policy Change: Governments and policymakers need to recognize the unique challenges faced by rarediseasepatients.
Advocacy efforts on Rare Disease Day push for legislative changes, such as increased funding for rare disease research, improved access to treatments, and the establishment of rare disease registries.
Fostering Research and Innovation: One of theprimarygoalsofRareDiseaseDayisto promote scientific research Greater awareness leads to increased funding opportunities for researchers to develop new therapies and potential cures. Pharmaceutical companies are encouraged to invest in the development of orphan drugs medications specifically designedforrareconditions.
Empowering Patients and Families: Rare Disease Day provides a platform for patients and caregivers to share their stories, fostering a sense of solidarity and reducing the isolation that many individuals feel. By speaking out, they help shape healthcare policies and ensure their needsareaddressed.
Encouraging Collaboration: The global nature of Rare Disease Day promotes collaboration among different stakeholders, including patient advocacy organizations, medical professionals, and researchers International cooperation is essential for rare disease research, as pooling resources and data can accelerate the discovery oftreatmentsandcures.
The Importance of Rare Disease Day: Amplifying the Voices of Rare Disease Patients
ThePowerofPatientAdvocacy
Thevoicesofrarediseasepatientsareessential in driving change. Many patient advocacy groups work tirelessly to ensure that those affected by rare conditions receive the support they need. Their efforts have led to significant advancements,suchas:
ImprovedDiagnosticTools:Advocacyhasledto the development of newborn screening programs and advanced genetic testing, enablingearlierdetectionofrarediseases
AccesstoTreatment:Patientorganizationshave successfully lobbied for expanded drug approvalprocessesandincreasedavailabilityof life-savingtreatments.
Community Building: Online platforms and support groups connect rare disease patients worldwide, allowing them to share experiences, exchange information, and offer emotional support.
Legislative Successes: In various countries, patientadvocacyhasledtotheimplementation of rare disease policies, such as the Orphan Drug Act in the US, which incentivizes pharmaceutical companies to develop treatmentsforrarediseases MovingForward:
TheFutureofRareDiseaseAdvocacy
While Rare Disease Day has made a significant impact, there is still much work to be done. To ensure continued progress, key areas of focus shouldinclude:
Expanding Research and Development: More investment is needed in rare disease research to develop effective treatments and cures. Encouraging pharmaceutical companies to engage in rare disease drug developmentremainsapriority.
ImprovingAccesstoHealthcare:
Many rare disease patients struggle with access to specialized care Policymakers mustworktowardestablishingraredisease centers of excellence and providing financialsupportfortreatments.
EnhancingGlobalCollaboration:Sincerare diseases affect small populations, international collaboration is essential for sharing research findings and clinical trial data.
Strengthening Patient Advocacy: Empowering patients and caregivers with resources, education, and advocacy training will help ensure their voices continue to influence healthcare policies andresearchpriorities.
The Importance of Rare Disease Day: Amplifying the Voices of Rare Disease Patients cont'd
Rare Disease Day is more than just a date on the calendar it is a movement that brings togetherpatients,caregivers,researchers,andadvocatesinaunifiedefforttoimprovethelives ofthoseaffectedbyrarediseases.Byamplifyingthevoicesofrarediseasepatients,societycan drive meaningful change, from increased research funding to improved access to healthcare. Recognizing the challenges faced by the rare disease community and taking collective action ensuresthatnopatientisleftbehind.
As Rare Disease Day continues to grow in prominence, it serves as a reminder that even the rarest conditions deserve attention, and every patient’s voice matters By raising awareness, advocatingforchange,andsupportingresearch,wecanworktowardafuturewhereraredisease patientsreceivethecare,treatment,andrecognitiontheydeserve.
Organizations Supporting Rare Disease Patients
There are numerous organizations dedicated to supporting rare disease patients at the national and international levels. Some of the key organizations include:
Canada
Canadian Organization for Rare Disorders (CORD) – A national network advocating for rare disease policies, research, and patient support.
Rare Disease Foundation – Focuses on research and patient support initiatives.
Health Canada’s Office of Rare Diseases – Works on regulatory frameworks and policies for rare diseases.
United States
National Organization for Rare Disorders (NORD) – Provides advocacy, education, and research funding.
Global Genes – Empowers patients and organizations in the rare disease community.
EveryLife Foundation for Rare Diseases – Works on policy initiatives and awareness campaigns.
Global Organizations
EURORDIS (European Organization for Rare Diseases) – Represents rare disease patients in Europe and beyond.
Rare Diseases International (RDI) – A global alliance of rare disease organizations advocating for better policies worldwide.
International Rare Diseases Research Consortium (IRDiRC) – Focuses on rare disease research and treatment development.
United Nations Rare Disease Initiative – Works towards global recognition of rare diseases within healthcare policies.
CACHEducation is evolving to better serve the needs of patient advocates and healthcare professionals with its rebrand to CACHEducation Academy. This transformation reflects an expanded commitment to delivering high-quality, structured learning experiences tailored to the ever-changing landscape of patient advocacy and healthcare education. As part of this rebrand, CACHEducation Academy will introduce Advanced Curriculum offerings starting in April 2025, providing deeper insights, specialized training, and enhanced skill development for those looking to elevate their expertise. This next phase marks a significant step forward in strengthening the capacity and impact of patient advocates through comprehensive and innovative education.
"Enrolling in CACHEducation was a game-changer for me as a patient advocate. The program provided invaluable knowledge, practical skills, and a supportive community that empowered me to make a real impact in healthcare advocacy."
New treatments offer hope to patients and their loved ones. Here, we present new therapies that are available to Canadians.
This section also addresses challenges around access to new medication. Our readers will find important information to help them understand Canada's drug review processes.
An informed and engaged patient is an empowered one. We aim to equip our readers with the tools and knowledge to navigate the complex healthcare landscape because, more than ever, patients need to raise their voices to get access to services. Accessing innovative medicines can save patients' lives.
Health Canada recent approvals in rare disease
by Brigitte Leonard, Ph.D
In 2024, Health Canada approved 9 products targeting several rare disorders. This approval rate demonstrate the combining efforts of government policies, research capabilities and pharmaceutical companies deployed to address these conditions.
New hope for people with sickle cell disease or beta-thalassemia
Health Canada approved Casgevry for commercialization in September 2024 to treat two rare genetic blood disorders: sickle cell disease and beta-thalassemia Casgevy (exa-cel: exagamglogene autotemcel) is a gene therapy developed by Vertex Pharmaceuticals and CRISPR Therapeutics. Casgevy reduce significantly pain crises and hospitalizations in sickle cell disease by reaching normal or near-normal adequate hemoglobin levels.
Good new for anemic patients diagnosed with myelofibrosis
Myelofibrosis is a rare cancer characterized by an overproduction of abnormal blood cells and inflammation markers called cytokines. Treatment of myelofibrosis has improved significantly since the 1st JAK inhibitor, Jakavi, was approved in 2011. However, anemia, often present at diagnosis, represents a limiting factor to treat patients with a typical JAK inhibitor. Ojjaara is as efficient as other JAK inhibitors. However, unlike other therapies, it can improve anemia by facilitating the production of blood cells. SIMPLIFY trials have demonstrated that patients can reach healthier blood levels and become transfusionindependent. Some patients could even delay complex procedures such as transplantation due to this treatment.
What about a rare pulmonary condition called arterial hypertension ?
Health Canada approved WINREVAIR in August 2024, respectively. Merck demonstrated the safety and efficacy of WINREVAIR in pulmonary arterial hypertension (PAH) with the STELLAR trial (NCT04576988). PAH is a rare, progressive and life-threatening disease in which blood vessels in the lungs thicken and narrow, causing significant strain on the heart [?]. WINREVAIR, added to background therapy, increases physical capability and reduces the risk of death and clinical events related to PAH with an acceptable safety profile.
Health Canada recent approvals in rare disease cont'd
Finally, something new to improve the treatment of rare forms of glioma!
Health Canada approved VORANIGO in August 2024 for treating rare brain tumours called astrocytoma and oligodendroglioma. These rare forms of cancer have a mutation called IDH1 or IDH2. Servier supported the development of Voranigo, which blocks the action of IDH1 or IDH2 proteins, reducing cancer cell growth. The submission included the results from the INDIGO Trial (NCT04164901). In this clinical trial, Voranigo reduced the disease progression by more than half compared to the placebo (28% vs 54%). Also, during the study, patients treated with Vorangio didn't reach the median time to the subsequent treatment (TST). However, patients on the placebo reached TST at 18 months.
HealthCanadaapprovedVOYDEYAinJuly2024asanadd-ontostandardtherapy to treat patients with paroxysmal nocturnal hemoglobinuria (PNH) who have residual anemia The product, developed by Alexion and AstraZeneca, has been available on the USA market since April 2024 PNH is a rare, debilitating, and lifethreatening blood disorder. A mutation makes a protective protein disappear from the surface of blood cells. This anomaly causes severe anemia via massive red blood cell destruction in blood vessels. Also, patients can have blood clots due to theactivationofwhitebloodcellsandplatelets.
What about Acid sphingomyelinase deficiency?
Acid sphingomyelinase deficiency (ASMD) is a rare genetic disorder caused by a deficiency of the enzyme acid sphingomyelinase. This enzyme is essential for breaking down a fatty substance called sphingomyelin. ASMD exists on a spectrum, with severe to milder neurodegenerative forms. Accumulation of sphingomyelin in cells can cause harm to the lungs, spleen, and liver, as well as other organs, potentially leading to early death (8). XENPOZYME is an enzyme replacement therapy indicated for long-term treatment of non-central nervous system (CNS) manifestations of acid sphingomyelinase deficiency (ASMD) in pediatric and adult patients. The approval was based on two randomized trials, ASCEND and ASCEND-Peds, where XENPOZYME demonstrated meaningful improvement of the lung and the spleen with a good safety profile (9).
Health Canada recent approvals in rare disease cont'd
In July 2024, HC approved ZILBRYSQ for treating generalized myasthenia gravis (gMG)[PM]. The FDA (USA) and EMA (Europe) approved the product in October and December 2023, respectively [?]. gMG is a rare autoimmune disorder. The immune system attacks the connection between nerves and muscles, leading to muscle weakness. This condition occurs later in life between 40 to 60 years old. This progressive disease is debilitating and life-threatening. The initial symptoms can be eyelid drooping and difficulty keeping the mouth closed. Over time, more severe symptoms appear, like difficulty swallowing, leg paralysis and difficulty breathing. UCB Pharma sponsored the development of ZILBRYSQ, which interferes with the immune system to prevent damage to these connections. In the RAISE study, patients improved functionality over standard care with an acceptable safety profile. The improvement is significant at 12 weeks and continues to improve over time.
In June 2024, HC approved WAINUA to treat hereditary transthyretinmediated amyloidosis (hATTR) [PM]. The FDA (USA) approved the product in December 2023 [Press]. hATTR is a rare genetic debilitating disease that leads to peripheral nerve damage. A mutation in the gene transthyretin (TTR) causes the production of a dysfunctional TTR protein. These TTR proteins form aggregations and cause nerve damage. Within five years of diagnosis, patients present with motor disabilities. Without treatment, the genetic disorder is generally fatal within a decade [Cortese]. AstraZeneca and Ionis Pharma sponsored the development of WAINUA, which reduces the production of TTR proteins. In the NEUROTTRansform study, patients treated with Wainua demonstrated consistent and sustained significant clinical benefits with an acceptable safety profile. The three significant clinical benefits are reduced serum TTR concentration, reduced nerve impairment and improved quality of life.
Approved in February 2024, MYALEPTA became the first and only treatment available to treat lipodystrophy, a life-treating ultra-rare genetic disorder characterized by complete or partial absence of fat tissue (2). Diagnosing lipodystrophy can be complex because less than 200 Canadians could be afflicted, and the clinical presentation varies greatly depending on the mutations involved. In these patients, lack of fat tissue impacts the leptin production, a hormone crucial in regulating hunger and energy balance. They develop several complications, such as severe insulin resistance (diabetes), hypertriglyceridemia, renal failure, and cardiovascular disease at a very young age (3). Myalepta is a leptin replacement therapy that addresses the central issue of this syndrome with a meaningful reduction of blood sugar markersandtriglyceridesinheavilypre-treatedpatients(4).
CADTH/CDA call for patient input for oncology products
by Brigitte Leonard, Ph.D
The Canadian Agency for Drugs and Technologies in Health (CADTH) is an independent, not-forprofit organization that provides evidence-based assessments on drugs, medical devices, and healthcare technologies to support informed decision-making in Canada's healthcare system. CADTH collaborates with federal, provincial, and territorial governments (excluding Quebec) to evaluate the clinical effectiveness, cost-effectiveness, and broader impact of new and existing healthcare interventions. By conducting Health Technology Assessments (HTAs), providing reimbursement recommendations, and developing guidance reports, CADTH plays a crucial role in shaping healthcare policies, ensuring that patients, healthcare providers, and policymakers have access to reliable, science-driven information to improve health outcomes and optimize resource allocation.
https://www.cda-amc.ca
by Brigitte Leonard, Ph.D
The Connectivity Between Value-Based Healthcare and Patient Advocacy
by Cheryl Petruk, MBA VBHC Greenbelt
In recent years, healthcare systems around the world have faced increasing pressure to improve patient outcomes while managing rising costs. This has given rise to the adoption of Value-Based Healthcare (VBHC), a model that focuses on improving the quality of care and patient outcomes while simultaneously controlling costs. At its core, VBHC incentivizes healthcare providers to deliver better care by rewarding them based on the value they create for patients rather than the volume of services provided.
A crucial aspect of VBHC is its emphasis on patient-centred care, which aligns seamlessly with the principles of patient advocacy. Patient advocacy is about empowering patients to understand and navigate the healthcare system, ensuring their voices are heard, and advocating for their rights, safety, and access to highquality care. We explore the vital connection between ValueBased Healthcare and patient advocacy, highlighting how these concepts transform healthcare delivery and improve patient outcomes.
Understanding Value-Based Healthcare (VBHC)
Value-based healthcare (VBHC) is a transformative approach to healthcare delivery that focuses on maximizing the value of care provided to patients. Value is defined as the outcomes achieved per dollar spent. In VBHC, the emphasis is on improving the quality of care, achieving better health outcomes, and reducing unnecessary services and costs. Unlike the traditional fee-forservice model, which incentivizes providers to deliver more services regardless of their impact on patient health, VBHC ties financial reimbursement to patient health outcomes and the efficiency of care delivery.
The Connectivity Between Value-Based Healthcare and Patient Advocacy
There are several key components to VBHC:
Outcome Measurement: A defining feature of VBHC is the measurement of patient outcomes. Healthcare providers are accountable for improving specific outcomes, such as survival rates, functional status, quality of life, and patient satisfaction. These outcomes must be clearly defined, measured, and tracked over time to assess the effectiveness of care.
Care Coordination: VBHC focuses on delivering coordinated care that addresses patients' needs across the entire continuum of care. This involves collaboration among various healthcare providers, ensuring patients receive the right care at the right time, avoiding fragmented and redundant services, and reducing inefficiencies.
Patient-Centered Care: Patient advocacy plays a key role in ensuring that care is tailored to the individual patient's needs, preferences, and values. VBHC seeks to empower patients to be active participants in their care, providing them with the tools, information, and support they need to make informed decisions about their health.
Cost Efficiency: VBHC aims to reduce unnecessary spending and inefficiencies by focusing on outcomes and care coordination. This is achieved by eliminating waste, such as unnecessary tests, hospital readmissions, or prolonged stays, which do not contribute to improved patient health.
The Connectivity Between Value-Based Healthcare and Patient Advocacy
The Role of Patient Advocacy in Healthcare
Patient advocacy is essential to ensure that healthcare systems are truly patient-centred. Advocates ensure that patients receive the best care possible, have access to accurate information, and are treated with respect and dignity. In practical terms, patient advocates act as liaisons between patients and healthcare providers, helping patients navigate complex medical decisions, understand their rights, and receive timely and appropriate care. Some of the primary goals of patient advocacy include:
Empowering Patients: Patient advocates help patients understand their diagnoses, treatment options, and potential outcomes. By providing clear and accessible information, advocates enable patients to make informed decisions about their care and participate actively in the treatment process.
Ensuring Quality and Safety: Advocates work to ensure that patients receive high-quality care, free from harm, and aligned with their values and preferences. They help ensure that patients are not subjected to unnecessary treatments, procedures, or delays, which can compromise patient safety.
Advocating for Access to Care: Patient advocates work to ensure that patients have access to the care they need when needed. This can involve addressing barriers to care, such as financial constraints, insurance issues, or geographic limitations, and helping patients navigate the complexities of healthcare systems.
Protecting Patients’ Rights: Patient advocates work to safeguard patients' rights, ensuring that they are treated with dignity and respect. They also help ensure that patients are aware of their rights to privacy, informed consent, and shared decision-making.
The Connectivity Between Value-Based Healthcare and Patient Advocacy
TheConnectionBetweenVBHCandPatientAdvocacy
The principles of Value-Based Healthcare and patient advocacy are closely intertwined, as both focus on improving the quality of care, enhancing patient outcomes, and ensuring that care is tailored to individual patient needs Here’s how patient advocacy supports the implementation of VBHC and why these two concepts work hand in hand to create a more effective, patientcenteredhealthcaresystem:
1.ImprovedPatientOutcomes
A fundamental goal of VBHC is to improve patient outcomes, and patient advocacy plays a critical role in achieving this goal. Advocates ensure that patients have the information and supporttheyneedtomakeinformeddecisionsabouttheircare.Byactivelyinvolvingpatientsin their treatment plans, advocating for their preferences, and ensuring that their needs are met, patientadvocatescontributetobetterhealthoutcomes.
For example, a patient diagnosed with breast cancer may have several treatment options, including surgery, chemotherapy, or radiation. A patient advocate can help the patient navigate the options, understand the benefits and risks, and make an informed decision that aligns with thepatient’svaluesandpreferences.Thisapproachensuresthatthetreatmentplanisclinically effectiveandpersonallymeaningful,improvingbothclinicaloutcomesandpatientsatisfaction
2.EnsuringCareCoordination
OneofthecornerstonesofVBHCiscarecoordination,whichinvolvesacollaborativeapproach tomanagingpatientcareacrossmultipleprovidersandsettings.Patientadvocatesplayacritical role in facilitating this coordination. They help patients receive timely follow-ups, manage transitionsbetweencaresettings,andavoidunnecessarytestsorprocedures. For example, suppose a patient transitions from a hospital to a rehabilitation facility after surgery. In that case, a patient advocate can help coordinate this transition, ensuring that the necessaryinformationiscommunicatedtotherehabilitationteamandthatthepatientreceives appropriatefollow-upcare Thisreducesfragmentationincareandimprovesthecontinuityof treatment,whichisessentialforbetteroutcomesintheVBHCmodel.
3.EnhancingPatient-CenteredCare
Patient-centred care is a key focus of both patient advocacy and VBHC. By advocating for patients, patient advocates ensure that care is aligned with patients’ individual needs, preferences,andvalues Thiscaninvolvehelpingpatientsnavigatecomplexmedicaldecisions, ensuringtheyareinformedabouttheiroptions,andsupportingtheminmakingdecisionsthat areintheirbestinterest.
In VBHC, providers are incentivized to deliver care that is not only effective but also personalized to meet the unique needs of each patient. Patient advocacy supports this by ensuringthatpatientsareactiveparticipantsinthecareprocessandthattheirvoicesareheard. Whenpatientsfeelheardandempowered,theyaremorelikelytobesatisfiedwiththeircareand toadheretotreatmentplans,whichultimatelyleadstobetteroutcomes
The Connectivity Between Value-Based Healthcare and Patient Advocacy
4. Addressing Health Inequities
Patient advocates are often at the forefront of addressing health disparities and ensuring that all patients, regardless of socioeconomic status, race, or geographic location, have access to the care they need. In the context of VBHC, addressing health disparities is crucial because outcomes can be significantly influenced by factors such as access to care, social determinants of health, and health literacy. Patient advocates help identify and overcome barriers to care, whether financial, logistical, or systemic. By advocating for vulnerable populations, they ensure that the principles of VBHC are applied equitably, improving access to high-quality care for all patients.
5. Measuring and Reporting Outcomes
A critical component of VBHC is measuring patient outcomes to assess the value of care provided. Patient advocates play a role in ensuring that patients’ perspectives are included in these outcome measures. Patientreported outcome measures (PROMs) are a valuable tool for capturing patients’ experiences, satisfaction, and quality of life, which are essential for assessing the effectiveness of care.
Advocates can help ensure that patients know the importance of reporting their outcomes and that their feedback is collected accurately. This data is then used to improve care delivery and ensure that providers are meeting patients’ needs.
The Future of VBHC and Patient Advocacy
As healthcare systems shift towards value-based models, integrating patient advocacy into the VBHC framework will be essential for success. By improving outcomes, coordinating care, ensuring patient-centred treatment, and addressing health disparities, VBHC and patient advocacy work together to create a more efficient, equitable, and effective healthcare system. Patient advocacy must be fully integrated into the care process for it to thrive in a value-based environment. Advocates must work closely with healthcare providers, patients, and families to ensure that patients receive the best possible care. As healthcare systems continue to evolve, the partnership between VBHC and patient advocacy will play a pivotal role in improving the overall quality of care, enhancing patient experiences, and achieving better health outcomes across diverse patient populations.
Ultimately, the combination of Value-Based Healthcare and patient advocacy represents a holistic approach to healthcare that puts patients at the center of the care process and ensures that they receive not just the best medical care, but also the support and advocacy they need to navigate the complexities of modern healthcare systems.
Exciting News from Heal Canada! We are thrilled to announce the launch of our new podcast series, Empowering Voices, dedicated to amplifying the stories and insights of patients, healthcare professionals, and advocates in the blood disorder and rare disease communities. Each episode will feature meaningful conversations on patient experiences, emerging research, and the evolving landscape of healthcare advocacy. Through Empowering Voices, we aim to educate, inspire, and drive change by bringing real-world perspectives to the forefront. Stay tuned for our first episode, coming soon because every voice matters!
Welcome to the Belonging, Diversity, Inclusion and Equity section of Heal Canada’s Digital Magazine. In this section, we provide information on ensuring that BDEI is part of the patient conversation in our Health ecosystem. Our focus is to illuminate the pathways through which individuals grappling with health challenges can not only find their voice but also harness it to drive their own journey.
Healthcare and the patient’s experiences should not be determined by social determinants of health.
We believe that an informed and engaged patient is an empowered one. Through enlightening articles, expert insights, and inspiring stories, we aim to equip our readers with the tools and knowledge necessary to navigate the complex healthcare landscape.
The Correlation Between Rare Diseases and Diverse Populations: The Role of Patient Advocacy
by Cheryl A Petruk, MBA
systems worldwide These diseases often lack widespread research, accessible treatments, and clear diagnostic pathways, disproportionately impacting diverse populations. Racial and ethnic minorities frequently experience delayed diagnoses, misdiagnoses, and reduced access to emerging therapies, exacerbating health disparities. Patient advocacy has emerged as a crucial force in bridging these gaps by raising awareness, influencing policy, and fostering research initiativesthataddresstheuniqueneedsoftheseunderservedcommunities. UnderstandingtheLinkBetweenRareDiseasesandDiversePopulations
Historically, medical research and healthcare policies have been predominantly designed around majority populations, often overlooking the genetic, environmental, and socioeconomic factorsthatinfluencediseasepresentationandprogressioninminoritygroups.Thisoversightis particularly concerning in the realm of rare diseases, where early diagnosis and treatment are critical
For example, sickle cell disease (SCD), which primarily affects individuals of African, Middle Eastern, and Indian descent, has long been underfunded in comparison to cystic fibrosis, a condition more prevalent in Caucasian populations. Despite both being life-threatening genetic disorders, cystic fibrosis receives significantly more research funding and public awareness (Farooqetal.,2021).Thisdisparityhighlightsthesystemicinequitieswithinrarediseaseresearch andhealthcareaccessibility.
Similarly,Fabrydisease,araregeneticdisorderaffectingthebody'sabilitytobreakdownlipids, is often misdiagnosed in populations of African or Hispanic descent due to the historical belief that it primarily affects Caucasian males (Ortiz et al., 2019). The lack of clinical awareness in diverse populations leads to missed opportunities for early intervention, resulting in poorer healthoutcomes.
The Correlation Between Rare Diseases and Diverse Populations: The Role of Patient Advocacy cont'd
The Role of Patient Advocacy in Addressing Disparities
Patient advocacy organizations play a crucial role in tackling these disparities by amplifying patient voices, educating healthcare providers, and pushing for inclusive research practices. Advocacy groups have spearheaded efforts to increase diverse participation in clinical trials, ensuring that rare disease treatments are tested across varied genetic and environmental backgrounds.
Case Study: The National Organization for Rare Disorders (NORD) and Health Equity
NORD has been instrumental in advocating for equitable access to rare disease treatments, particularly for minority groups. In 2022, the organization launched an initiative to engage diverse communities in rare disease research by collaborating with historically Black colleges and universities (HBCUs) and Hispanic-serving institutions. Through outreach programs, NORD has facilitated genetic testing access, reducing the diagnostic gap for conditions like sickle cell disease and hereditary angioedema (NORD, 2022).
Case Study: The Global Genes Foundation and Community Engagement
Global Genes, another leading rare disease advocacy organization, has emphasized the importance of culturally competent healthcare. In collaboration with community health centers, Global Genes has developed multilingual educational resources to increase awareness of rare diseases among Hispanic, Asian, and Indigenous populations. Their Rare Disease Diversity Coalition has worked to remove barriers to healthcare by advocating for policy changes that ensure Medicaid and Medicare coverage for emerging rare disease treatments (Global Genes, 2023).
The
Correlation Between Rare Diseases and Diverse Populations: The Role of Patient Advocacy cont'd
TheImportanceofInclusiveResearchandPolicyAdvocacy
One of the primary challenges in rare disease treatment development is the underrepresentation of minority populations in clinical research Genetic variations that influence disease severity and treatment efficacy can vary by ethnicity, yet clinical trials often failtoreflectthesedifferences Advocacygroupshavebeenattheforefrontofdemandingmore inclusivetrialrecruitmentstrategies
The FDA has taken steps to address this issue through the Rare Diseases Diversity Initiative, which aims to increase minority participation in clinical trials by partnering with advocacy groups and community organizations (FDA, 2023). These efforts have shown promising results, butsustainedadvocacyisnecessarytoensurelong-termchange.
Health Canada has recognized the need for greater diversity in rare disease research and is working towards improving representation in clinical trials. Through initiatives like the National Strategy for Drugs for Rare Diseases, launched in 2023, efforts are being made to enhance access to treatments and foster partnerships with patient advocacy groups and community organizations. While these steps show promise, sustained advocacy and policy advancements areessentialtoensurelong-termequityinrarediseaseresearchandcareacrossCanada
To further address disparities, advocacy organizations and policymakers must work together on severalkeyinitiatives:
Mandatory Reporting of Demographic Data in Research – Clinical trials should be required to report the racial and ethnic breakdown of their participants, ensuring transparency and accountability.
Improved Access to Genetic Testing – Federal and state health programs should expand coverage for genetic screening and diagnostic testing in historically underserved communities
2
Culturally Competent Medical Education – Medical schools should integrate rare disease awareness training into their curricula, with a focus on recognizing symptoms across differentethnicbackgrounds.
3.
Strengthening Community-Based Advocacy – Grassroots organizations should receive fundingtoconductoutreachprograms,ensuringthatpatientsfromdiversecommunitiesare awareoftheirhealthcareoptions.
The Correlation Between Rare Diseases and Diverse Populations: The Role of Patient Advocacy
4 Culturally Competent Medical Education – Medical schools should integrate rare disease awareness training into their curricula, with a focus on recognizing symptoms across different ethnicbackgrounds
5.StrengtheningCommunity-BasedAdvocacy–Grassrootsorganizationsshouldreceivefunding to conduct outreach programs, ensuring that patients from diverse communities are aware of theirhealthcareoptions.
The intersection of rare diseases and diverse populations highlights an urgent need for equityfocused healthcare interventions. While systemic barriers continue to limit access to timely diagnoses and effective treatments, patient advocacy organizations serve as catalysts for change. By promoting inclusive research, shaping policy, and fostering community engagement, advocacy groups play an essential role in ensuring that all patients, regardless of racial or ethnic background, receive the care they need. Moving forward, continued collaboration between healthcare professionals, policymakers, and patient advocates will be vital in addressing the disparities that persist within rare disease care.
Mental Health
Welcome to the Mental Health section of Heal Canada Digital Magazine, a dedicated space where we embrace the journey towards mental wellness with open arms and open hearts. In this edition, we delve into the empowering world of patient advocacy, engagement, empowerment, and education. Our focus is to illuminate the pathways through which individuals grappling with mental health challenges can not only find their voice but also harness it to drive their own journey.
We believe that an informed and engaged patient is an empowered one. Through enlightening articles, expert insights, and inspiring stories, we aim to equip our readers with the tools and knowledge necessary to navigate the complex mental health care landscape.
Join us as we explore how patient advocacy, active engagement and comprehensive education can transform the experience of mental health care, turning obstacles into opportunities for growth and healing.
The Pendulum of Rare Disease Coping: Navigating Grief, Loss, and Resilience
by Kristy Brosz, MSW, RCSW
Living with a rare disease is a journey marked by constant shifts—between hope and despair, strength and exhaustion, acceptance and denial. Like a pendulum, the experience of rare disease swings back and forth in response to new diagnoses, treatments, and the everyday logistical realities of chronic illness. The grief that accompanies rare disease is not a singular event but an evolving process, as patients and their loved ones mourn the loss of health, independence, or long-held dreams.
Yet, within this grief, there is also adaptation that allows for a meaningful, unique journey. Coping with chronic illness is not about choosing between despair and resilience—it is about learning to exist in the space between them.
This article explores the duality of grief and coping in rare disease life, offering insights into how patients and their loved ones can navigate the ever-changing fluidity that accompanies rare disease. Like a pendulum, coping is not about staying on one end but continuously moving between grief and resilience.
The figure below outlines this duality by using the Pendulum of Coping with a Rare Disease. It highlights the need to move back and forth between both ends of the pendulum for optimal coping. It also highlights key factors that influence this movement.
Far Left of the Pendulum: Grief & Loss
On the loss end of the pendulum, there are many challenging experiences to explore, including:
Naming Feelings: Grief and loss can bring about many emotions, such as sadness, sorrow, anger, frustration, fear, anxiety, guilt, self-blame, isolation, loneliness, hopelessness, despair, and many others unique to each person. The ability to identify and name these feelings is an important step toward leaning into grief.
Grief Rituals: Patients and their loved ones can engage in unique rituals to explore the layers of loss, which may include the loss of health, independence, control, employment/education, future plans, and others.
Engaging in Supports to Reduce Isolation: A variety of supports—from peer support groups to professional counselling—can help reduce feelings of isolation. The key is ensuring that the connection between the patient and the support system is the right fit for them.
Managing Waves of Grief: Grief and loss are far from linear experiences. Acknowledging that grief comes in waves and learning to ride those waves can be critical to processing its depths.
The Pendulum of Rare Disease Coping: Navigating Grief, Loss, and Resilience
Far Right of the Pendulum: Adjustment & Resilience
On the adjustment and resilience side, many important aspects can foster adaptation, including:
Changing Identity: A rare disease can alter one’s sense of self, requiring reflection and adaptation to a new identity. Recognizing that identity is fluid and ever-evolving can be empowering. Moving from the idea that identity needs to be static to recognizing that identity can shift and change will greatly assist in moving toward resilience.
Securing Supportive Medical Teams: Having a team of knowledgeable and compassionate healthcare providers can make a significant difference in managing a rare disease. Seeking out specialists, patient advocates, and coordinated care can help ease the burden and gain additional learning within communities that understand the depth of rare diseases.
Finding Small (and Big) Moments of Joy: Even amid hardship, small moments of joy—whether through hobbies, relationships, or simple pleasures and milestones—can bring light into daily life.
Moving from Self-Care to Survival Care: While traditional self-care practices are important, sometimes patients must focus on “survival care”—meeting the most basic needs in times of extreme physical or emotional distress. Being able to focus on what is needed most for survival care in any given moment can lead to the ability to lean into identity changes as well as help to communicate with loved ones about what helpful support can look like.
Legacy and Storytelling: Sharing one’s journey, whether through writing, speaking, or other creative outlets, can be a powerful way to process experiences and leave a lasting impact. This sense of intertwined storytelling and legacy-making can be extremely empowering and fulfilling.
Middle of the Pendulum: Transition
Navigating the pendulum swing between grief/loss and resilience/adaptation is not passive—it is guided by several key transition forces, which include:
Seeking Meaning and Purpose: Finding purpose, whether through advocacy, relationships, creative expression, or personal growth, can provide a sense of fulfillment.
Connections: Building relationships with others who understand the journey—whether through online communities, support groups, or friendships—can provide invaluable emotional support.
Self-Compassion and Patience: Recognizing that healing and adjustment take time and allowing oneself grace during difficult moments is essential.
Balancing Advocacy Work and Self-Care: Many individuals with rare diseases become advocates, but balancing advocacy with personal well-being is crucial to prevent burnout and helpful in leaning into identity changes over time.
Finding a Felt Sense of Safety: Emotional and physical safety—having trusted support systems, reliable care, and personal coping strategies—creates a foundation for resilience.
The Pendulum of Rare Disease Coping: Navigating Grief, Loss, and Resilience
cont'd
TwoPersonalJourneys:NavigatingthePendulum
To illustrate this journey, consider Sarah and James, two individuals living with different rare diseases.
Sarah, a 25-year-old living with a rare blood disorder, initially felt overwhelmed with grief upon her diagnosis. She mourned the active lifestyle she once had and struggled with frustration and fear for her future. Seeking support, she joined an online rare disease community, where she connected with others who understood and shared her experience. Over time, Sarah discovered small moments of joy — painting, meditation, and storytelling — helping her shift toward resilience.
However, just as she felt she had found balance, a severe flare-up forced her to pause her new hobbies and return to feeling isolated. She once again found herself grieving her body's limitations. A therapist helped her reframe this moment not as a failure but as part of the pendulum's natural swing. Gradually, she rebuilt her strength and found new ways to express herself,provingthatresilienceisnotadestinationbutanongoingprocess.
James’s Story: Finding Strength Through Setbacks
James, a father of two, was diagnosed with a rare degenerative neuromuscular disorder in his late 40s. At first, he found himself consumed by grief —mourning his physical decline and worrying about how his condition would impact his family. He withdrew socially, fearing he would become a burden. However, through the encouragement of his wife, he sought counselling and eventually connected with a patient advocacy group. With time, James shifted from despair to resilience, using his experience to mentor newly diagnosed patients. He found a renewed sense of purpose in sharing his journey, helping others navigate the same struggles. Just as he felt he had embraced his new role, an accidental fall leading to the worsening of his condition left him feeling powerless again. He fell back into grief, questioning his ability to continue advocating. But through support from his community and the reminder that his voice still mattered, he adapted once more—adjusting his advocacy efforts to fit his new limitations. His journey highlights how the pendulum never truly stops swinging, but each swing brings deeper understanding and new ways to cope.
The Pendulum of Rare Disease Coping: Navigating Grief, Loss, and Resilience cont'd
Thejourneyofcopingwithararediseaseisneverlinear.Itisaconstantmovementbetweengrief and adaptation, struggle and strength. There will be moments when the weight of loss feels overwhelming and others when resilience shines through in unexpected ways The pendulum may never stop swinging, but with time, support, community, and self-compassion, its motion canbecomemoremanageable
Copingwithchronicillnessisnotaboutreachingafinalstageofacceptance itisaboutlearning toleanintothebeautifulhardofthejourney,tolivewithintheflux,embracingboththedifficult and the hopeful. It is about constant movement back and forth between both ends of the pendulum. By acknowledging grief while also fostering resilience, individuals and their loved onescanfindasenseofbalance,evenintheever-changinglandscapeofrarediseaselife.
Kristy Brosz, MSW, RCSW
Kristy is a mental health therapist in private practice and is registered to see clients in 5 Canadian provinces including: BC, AB, SK, ON, and NS. Kristy's practice specializes in chronic illness and focuses on the intersection between trauma and grief.
Kristy has presented nationally and internationally and has authored 2 trauma-informed books, including one book on rare disease title: Letters to HAE: Finding Hope While Living with Hereditary Angioedema.
Contact: kristy@brosz.ca; www.brosz.ca/kristy
Reading for Well-Being
by Joanna Pozzulo, Ph.D.
With a new year here, people often take the opportunity for a “new start” by swapping out old habits with new ones or at least trying. Or maybe you’ve been trying to make a change but finding it won’t “stick”. Maybe you’re using an ineffective strategy or approach.
In case you’re looking for some help to make a new habit stick, you may want to read How to Change: The Science of Getting from Where You Are to Where You Want to Be by Katy Milkman (2021; published by Portfolio). Milkman (2021) reviews the science of how to make behaviour change last with several evidencebased strategies to help you reach your goals.
Milkman examines the steps you can take to make changes that can help improve health and well-being. Milkman’s expertise in “change behaviour” makes this book not only educational by explaining the science behind behaviour change but also provides a “how to” to achieve your desired change. Each chapter examines an internal obstacle that stands between you and achieving your goal. By the end of the book, you’ll learn how to recognize the obstacles and what you can do to overcome them.
Many of the strategies are relatively easy to implement, such as bundling, where you take a task, you’re not so keen on (for me, it is doing exercise) with one you look forward to (such as reading the latest psychological thriller ☺). If you combine the two, you might find yourself more likely to do the task you’re not so keen on (exercising).
There are lots of evidence-based strategies described in the book to help you follow through on changes you want to make. Another great strategy is to set a reminder for yourself at the actual time that you need/want to do something. I also think it is worth noting that mindset matters, how we think about something matters. As Milkman states, “What we think we’re capable of is crucial when it comes to behaviour change.”
Reading for Well-Being cont'd
The end-of-chapter takeaway points are very helpful summary notes. I found this book so informative that I am going to read it again!
I couldn’t put it down with my first read. A real page-turner for anyone looking to make some changes for improved well-being and health. Definitely worth reading at least once!
If you want to hear from Dr. Milkman directly, check out my interview with her on the Reading for Well-being Podcast: https://www.youtube.com/@ReadingforWell BeingPodcast.
Don’t forget to subscribe if you don’t want to miss any of my interviews.
For more evidence-based picks for wellbeing, sign up for the Reading for Well-Being Community Book Club at https://carleton.ca/mental-health/bookclub-sign-up/
Happy reading!
Joanna Pozzulo, Ph.D. Chancellor’s Professor Department
of Psychology Director, Mental Health and Well-Being Research and Training Hub (MeWeRTH) https://carleton.ca/mental-health/ Carleton University
How to Bounce Back After a Relationship Conflict
by Cassandra Wolfe, MA, RP, LPC, CAADC
Conflict is a natural part of any healthy relationship. That being said, how you navigate through relationship conflict and successfully come out the other side after an argument is what many couples struggle with.
Whether it is a small disagreement or a deeper-rooted argument, navigating the aftermath of a conflict can feel overwhelming and emotionally draining, to say the least!
Our ability to bounce back and reconnect is an essential component for building more resilient, healthy, and loving relationships. Follow along as we provide practical steps to help you recover from relationship conflicts, regain emotional balance, and get on the path to strengthening your connection with your partner.
Understanding Conflict in Relationships
Conflict in a romantic relationship can look different for everyone. Generally speaking, it is an expressed struggle between partners based on a perception of incompatible goals, disagreements of needs, or differences in values. Relationship conflicts often evolve when each partner’s desires or expectations fall out of alignment, leading to frustration, emotional pain, tension, or possibly misunderstandings. While conflict is completely natural in every healthy relationship, as it provides an avenue to address our needs, communicate in a safe space, and grow together, how it’s handled during and afterwards is what truly matters.
TheConflictItself
One study found that how couples handle conflict can help determinewhethertheyfeelsatisfiedintheirrelationshipsornot
An example of this is negative behaviours, such as criticizing and yelling, both of which have been linked to higher instances of divorceamongmarriedcouples.
In another 2017 study, researchers found two important mechanisms for approaching relationship conflicts while it is happening:
1.
Directly addressing serious issues can be helpful when both partners feel secure, but it may be harmful if they lack confidence.
2.
A softer, cooperative approach with affection works well for minor issues but can hinder effective problem-solving for moreseriousones
As couples work through their disagreements, they can begin to build resilience and healthier patterns over time, which is crucial totheprocessofrecoveryandgrowthinrelationships
How to Bounce Back After a Relationship Conflict cont'd The Process of Recovery
No matter if the pattern of relationship conflict happens to be related to your partner’s habits, household chores, finances, quality time, intimacy, parenting, or role expectations, understanding how to move forward constructively is the goal.
Here are 3 steps involved in the process of recovery.
1. Acknowledge the Conflict
Acknowledging the existence of the conflict is an essential step in the recovery process. While it might seem obvious - "of course, it happened; that’s clear as day" - recognition here means fully accepting the impact it had.
There is a level of emotional awareness involved in being able to identify the feelings that were experienced in a relationship conflict. This can be done by reflecting emotions and putting a name to them. Were you feeling hurt, angry, or misunderstood? Naming the feelings can help clarify your experiences. Next, consider taking your partner’s perspective, and recognizing their emotions to build empathy and improve your ability to address that conflict as a partner. Remember, it’s you and your partner working together to resolve the problem, not competing against each other to win the argument.
2. Create a Safe Space for Dialogue
Before walking into this conversation, it’s helpful to first establish a safe and comfortable space for open communication. Setting the stage for dialogue involves:
Choosing a neutral setting that is free from distractions
Checking your emotional readiness (i.e. entering the conversation with a calm and grounded mindset)
Using open and welcoming body language to display a willingness to listen
Setting clear intentions by approaching the conversation with the goal of understanding and resolution, rather than blame
Establishing boundaries or ‘ground rules’ like not interrupting one another and respecting each others’ perspectives throughout the conversation
The priority is to ensure both parties feel safe to converse about the matter at hand.
3. Use Effective Communication Techniques
Using “I” statements can be a powerful tool for de-escalating tension and facilitating a more productive conversation. For instance, instead of saying, “You ignored me,” try framing it as, “I felt unheard when I shared my thoughts, and it affected me.”
This approach focuses on your emotions and experiences rather than attributing blame, which can make your partner less defensive and more willing to listen. It also helps prioritize understanding over confrontation, making it easier for both of you to engage in the conversation constructively.
How to Bounce Back After a Relationship Conflict cont'd
Another important technique in effective communication is listening. Active listening is a technique that encourages us to listen to understand rather than to respond. A 2018 study found that when one partner listens actively and attentively while the other shares their stress, it leads to better teamwork in handling challenges and greater satisfaction in the relationship.
Strategies for Rebuilding Together After RelationshipConflict
“Bouncing back” from a relationship conflict, even following the recovery process, can be tricky for many couples. While hopefully, many of the heavy emotions involved in the conflict itself may be resolved,theaftermathcanshakeupthefoundation oftrustandconnectionintherelationship
Here are some beneficial strategies to focus on when rebuilding your relationship following a conflict
Re-establishConnection
Finding a way back to one another on an emotional level requires the re-establishment of your connection.
One helpful way to establish a connection is to practice affection. Consider your love language, in terms of how both you and your partner prefer to give and receive love. The five love languages include:
1.
Physical touch: Small gestures like hand holding, hugging, or cuddling can all convey affection and comfort, helping bridge the emotional gap in intimacy
Quality time: Dedicate uninterrupted time to one another without distractions 2.
Words of affirmation: Making it a habit to offer a genuine compliment or reassuring words can help rebuild trust and security in the relationship 3.
4.
Acts of service: Courteous gestures that help your partner, such as running errands or taking care of household chores, can alleviate the burden of everyday tasks and show them you’re thinking of their needs
5
Gift-giving: Thoughtful gifts - whether big or small - can send a message of love and appreciation to your partner
If you have not yet discussed the love language with your partner, consider making time to talk this out.
Develop Resilience Together
Building resilience following an argument or disagreement can be incredibly rewarding in the long run. Consider these conflicts as an opportunity to improve your connection, to share perspectives, and learn a bit more about one another’s needs in the partnership. When relationship conflict does arise (because it will), reflecting on what was learned from the past argument can become the foundation for growth. Couples can also consider practicing mindful exercises together to help deepen connection, foster emotional intimacy, and ignite shared joy.
How to Bounce Back After a Relationship Conflict cont'd
Set Goals for Future Conflicts
During times when you have both fully resolved and are able to come together in a calm environment is a good time to set goals you might have for future conflicts. This 2022 study found that couples who strive to solve relationship conflict with cooperation and the goal to satisfy the needs of both individuals can create increased relationship satisfaction. Establishing general guidelines like, “We will not interrupt each other”, “We will never raise our voices at each other, no matter how frustrated we get,” or “We will take breaks from the conversation if things get too heated” can help keep things on track.
Consider Professional Help if Needed
Having an outside perspective is sometimes all it takes to break free from some of the frustrating patterns that evolve from everyday relationship conflicts. Couples counselling provides a safe space to air grievances without fear of being misunderstood, having issues minimized, or feeling stuck in conversations that go nowhere. Common areas of focus may include:
Pre-marital counselling is all about laying the groundwork for a strong marriage by exploring expectations, communication, and any concerns that could crop up down the road
Marriage counselling gives couples the tools to reconnect, work through ongoing challenges, and deepen their bond at any stage of their relationship
Infidelity counselling offers a safe space for couples to confront betrayal, begin the journey of healing, and rebuild trust if they choose to move forward together Starting therapy together can be a powerful step toward making a lasting change in your relationship.
Moving Forward
In any relationship, conflict is not just inevitable but can also serve as a catalyst for growth and deeper connection when navigated thoughtfully. By working through challenges collaboratively, partners can align their goals, strengthen their emotional connection, and craft a vision for a relationship that thrives on mutual understanding and support.
This article has been reprinted with permission from onyourmindcounselling.com We are grateful for their generosity in allowing us to share this important information with our readers.
Cassandra Wolfe, MA, RP, LPC, CAADC
As a registered psychotherapist, I have worked with adults with varying types of mental health needs, which have included anxiety, depression, substance abuse issues, life transitions, trauma, and co-occurring disorders. I take an eclectic approach to therapy, though I tend to utilize CBT, Person Centered, Trauma focused, Internal Family Systems and Mindfulness-based approaches. For more information, please contact On Your Mind Counselling Tel.: 1.888.222.6841 or Info@OnYourMindCounselling.com
Seniors Health
In today's society, the health of senior citizens stands as a paramount concern, particularly within the framework of the Canadian healthcare system. This heightened focus is more than just a response to the growing number of seniors. Still, it is deeply rooted in recognizing their invaluable contribution to society and their unique challenges in their twilight years.
As people transition into their senior years, they bring unique health and social needs. This shift presents challenges and opportunities for the Canadian healthcare system and society.
In our Seniors Health section, we will provide information to help you in your journey, navigate daily life as a Senior, and provide resources to help you have the best quality of life.
Memory care residencies: an option for seniors with cognitive challenges
by Grace Eneh
Being a caregiver to your aging parents or loved ones is seen by many as a privilege that they wouldn't trade for anything in the world. You get to play the role of mouthpiece and advocate while ensuring the best possible experience and services are available to them. According to Statistics Canada, 25 percent of Canadians who are 15 years and above are caregivers to a person (usually a family member) with a chronic health condition. A substantial proportion of these individuals with chronic health conditions are older adults.
Given the increasing aging population, the number of young people saddled with the responsibility of caregiving will continue to rise. This role becomes even more crucial when the senior you are caring for has some impairments in their cognitive functioning. As much as you allow them to make decisions about their health and residence, the bulk of the decision and 'heavy lifting' still lie with you.
Dementia is an umbrella name that encompasses impairments in various cognitive domains, particularly memory, of which Alzheimer's disease is the most common.
Many people would rather spend their retirement and later years in their homes, in a community where they have lived most of their lives. There is an assurance that comes with living in your home, where you have formed beautiful memories, built a community, and become deeply rooted.
Many seniors might need structural adjustments in their homes to maintain a good quality of life following retirement based on their specific health situations or mobility. For instance, smoke alarms, ramps or railings in the staircase, and light fittings might need to be installed for better visibility and fall prevention.
While this may be ideal, there are situations where home care and support are no longer sufficient to ensure a senior’s safety. In these cases, seniors and their caregivers must explore alternative living arrangements, such as a retirement or long-term care home. The following circumstances often necessitate this consideration:
Safety risk: A senior who lives alone may be considered a safety risk if they have become unable to manage the home safely with little or no assistance. For instance, seniors living alone may be exposed to fire hazards because they have memory challenges, hearing difficulty, or perceiving smells. They may be unable to perceive danger or protect themselves from it.
Memory care residencies: an option for seniors with cognitive challenges cont'd
Risk of wandering and getting lost in familiar environments: An older adult could begin to find it difficult to manage their affairs alone, as they may lose their way around the neighbourhood. For instance, they may even get lost inside the home, not recognizing the way to the bathroom or kitchen.
Physical limitations from chronic diseases or accidents: This can result from chronic disease conditions with attendant complications such as strokes, heart diseases, arthritis, Parkinson's disease, severe urinary or fecal incontinence and bone fractures following a fall.
Family challenges with managing home care: Sometimes, it becomes challenging for the caregivers in the family to manage at home due to numerous responsibilities, frequent travels, or even relocation.
The options available for senior living away from home range from retirement homes, assisted living, and senior living apartments to long-term care facilities. For seniors with cognitive impairments, care in a memory care center rather than a generic retirement residence or longterm care facility is a viable option.
Most long-term care homes provide medication management, health monitoring, meals, laundry services, and recreational activities to keep residents engaged and cared for. However, these services may not be personalized based on individual social history and capabilities.
On the other hand, memory care residencies provide specialized support for individuals with Alzheimer's disease and other forms of dementia, irrespective of the age or stage of disease progression. In addition to the services that most long-term care centers offer, memory care residencies also provide the following:
Personalized care plans to assist with daily activities:
Staff provide care in these stand-alone memory care residencies according to each resident's capabilities, family and social history, and personal needs.
Cognitive stimulation through therapy: Older people in memory care residencies are cared for by persons who are specially trained in memory care to provide recreational activities that promote cognitive stimulation. These activities are individualized and based on individual capacity, as informed by an ongoing cognitive evaluation.
Memory care residencies: an option for seniors with cognitive challenges cont'd
Asafeenvironmenttopreventharmwhilewandering:
The environment is safe and secure but not restrictive. Residents are not restrained; if they display behaviour that compromises their safety, they are gently persuaded or distracted by staff.Inaddition,theyavoidhavingpotentiallyharmfulobjectslyingaround. These homes focus on enhancing quality of life and maintaining safety for those with cognitive impairments.
The downside of having your loved one in this type of residence is the stigma or the fear of stigmabecausethenameoftheresidenceeasilygivesawaytheresident'sdiagnosis Secondly,theycanbequitepricey,makingitdifficulttosustainpayments.
Now that you're aware of the pros and cons of each option, the decision becomes clearer whethertochooseamemorycareresidenceoralong-termcarecenter.
Grace Eneh
Freelance Health Writer and Editor. A health professional and health writer. Grace combines her writing skills and clinical experience to deliver well-written, optimized articles for healthcare companies. Contact Grace at thegraciousdoc@gmail.com.
Benefits of Moving to a Retirement Residence vs. Staying at Home
by Peg Bocci
AsanEldercarePlanner,Ioftendiscusstheimportantdecisionmany olderadultsface:whether to move into a retirement home or continue living in their own homes. This decision is personal and requires careful consideration of various factors Below are the benefits of both options to helpolderadultsandtheirfamiliesnavigate
IndependenceandSupport
Oneoftheprimaryconcernsolderadultshavewhenconsideringamovetoaretirementhomeis the loss of independence. However, many retirement homes offer a balance between independence and support. Residents can enjoy their private space while accessing housekeeping, laundry, dining programs, and personal care services. This setup promotes autonomyandpeaceofmind,knowingthathelpisavailable.
SocialConnections
Loneliness and isolation can greatly impact the well-being of older adults living at home. Retirement residences offer a vibrant community environment where residents can engage in social activities, participate in events & holidays, and build meaningful relationships with peers. This social interaction is crucial for mental stimulation, emotional well-being, and overall happiness,combatingtheisolationthatsometimesaccompaniesagingathome
Access to Healthcare
Safety and Security
Another important consideration is the safety and security provided by retirement residences. These homes are designed with older adults' specific needs in mind, featuring amenities such as grab bars, emergency call systems, and supportive staff available 24/7. This environment reduces the risks associated with living alone, such as falls or medical emergencies, offering residents and their families a sense of reassurance knowing they are in a safe environment.
Retirement residences often have on-site health & wellness services or offer easy access to medical care brought into the residence. This proximity can be crucial for older adults with complex health needs or chronic conditions requiring regular monitoring and assistance. Having healthcare professionals nearby ensures a quick response to emergencies and continuity of care, contributing to better health outcomes for residents.
Benefits of Moving to a Retirement Residence vs. Staying at Home
Maintenance-FreeLiving
Maintaining a home can become increasingly challenging as we age. Retirement residences relieve residents of the burden of household chores, repairs, and yard work. This maintenancefreelivingallowsolderadultstofocustheirtimeandenergyonactivitiestheyenjoyratherthan ontheupkeepoftheirhomes,enhancingtheirqualityoflifeandreducingstress
CaregiverSupport
Moving to a retirement residence can alleviate the strain on family caregivers for older adults whorequiremoreassistancethancanbeprovidedathome.HealthandWellnessteammembers, such as personal support workers and nurses at retirement residences, are trained to meet the needs of older adults, offering specialized care and support tailored to individual preferences andhealthconditions.Thissupportnetworkwilllightenthecaregivingloadforfamilies,promote betterrelationships,andreducecaregiverburnout.
FinancialConsiderations
While the cost of retirement residences is a concern for many families, it's essential to consider theoverallfinancialimplicationsofagingathome.Homemaintenance,healthcareexpenses,and potential modifications to accommodate aging in place can add up over time. Retirement residences often offer inclusive pricing covering utilities, meals, activities, and some healthcare services.
PersonalChoiceandQualityofLife
Ultimately, the decision to move to a retirement residence or remain at home is a personal one thatshouldprioritizeindividualpreferences,healthneeds,andlifestylegoals Someolderadults thrive in the social environment of a retirement residence, while others prefer the comfort of their own homes. Older adults and their families should carefully evaluate both options, taking intoaccountfactorssuchaslocation,amenities,andthelevelofcareoffered.
Benefits of Moving to a Retirement Residence vs. Staying at Home con’t
In conclusion, whether choosing to move to a retirement residence or stay at home, the goal is to ensure a safe and comfortable lifestyle for older adults as they age. Each option offers advantages, and the decision should be guided by what best supports their well-being and enhances their overall quality of life.
As Eldercare Planners, we encourage older adults and their families to carefully consider this decision and seek professional guidance to explore all available options. Finding the right balance between independence, support, and community can lead to a fulfilling and enjoyable retirement journey.
Founder & CEO of Silver Lining Senior Advisors. She has worked in the senior living industry for over 20 years and has acquired a wealth of knowledge of this dynamic industry and the people living and working in it. For more information, please visit
www.silverliningsenioradvisors.com Peg@silverliningsenioradvisors.com or call +1 647-771-8276
Peg Bocci
Staying physically active is crucial for seniors to maintain their overall health and quality of life. Engaging in regular fitness activities helps improve strength, flexibility, balance, and cardiovascular health, reducing the risk of injury and chronic diseases. Fortunately, many free workout resources are available, particularly online. One such valuable resource to try is the
https://yes2next.com/
It is a mother-and-daughter dynamic duo showcasing a variety of exercises specifically tailored for those 50 and beyond and for individuals with limited mobility. Their YouTube channel offers you more than 200 free fitness videos.
Whether it's gentle stretches, chair exercises, or low-impact cardio routines, yes2next provides a convenient and effective way for seniors and everyone to stay active and maintain their wellbeing.
Pediatric Health
Welcome to the Pediatric Health section of Heal Canada Digital Magazine, a dedicated space where we embrace the journey toward pediatric wellness with open arms and open hearts.
We believe that an informed and engaged parent is an empowered one. Through enlightening articles, expert insights, and inspiring stories, we aim to equip our readers with the tools and knowledge necessary to navigate the complex pediatric health care landscape.
Join us as we explore how patient advocacy, active engagement and comprehensive education can transform the pediatric health care experience, turning obstacles into opportunities for growth and healing.
Pediatric Rare Diseases: The Opportunity for Advocacy to Transform Care
by Cheryl Petruk, MBA
Pediatric rare diseases represent one of the most pressing yet underserved challenges in modern medicine. Affecting an estimated 30 million children worldwide, these conditions often go undiagnosed or misdiagnosed for years, delaying crucial interventions. Advocacy plays a critical role in improving outcomes for children with rare diseases by raising awareness, influencing policy, and fostering research advancements. By strengthening advocacy efforts, we can enhance diagnosis, treatment, and overall quality of life for pediatric patients and their families.
The Unique Challenges of Pediatric Rare Diseases
Unlike common childhood illnesses, rare diseases frequently lack robust clinical guidelines and established treatment protocols. Some key challenges include:
Delayed Diagnosis – Many rare diseases have nonspecific symptoms, making early diagnosis difficult. On average, it takes five to seven years for a patient with a rare disease to receive an accurate diagnosis, a period known as the ‘diagnostic odyssey.’ This delay can lead to disease progression and missed treatment opportunities (Shah et al., 2019).
1. Limited Treatment Options – Pharmaceutical companies often overlook rare diseases due to the small market size, leading to a lack of targeted therapies. While orphan drug incentives have increased investment, many pediatric conditions remain without approved treatments (U.S. Food & Drug Administration, 2020).
2. Burden on Families – Caring for a child with a rare disease often involves navigating a complex medical system, coordinating with multiple specialists, and shouldering significant financial and emotional burdens. Families must advocate for their child's care, education, and accessibility needs (Pelentsov et al., 2016).
Pediatric Rare Diseases: The Opportunity for
3. Lack of Research and Data – Due to the small patient populations, clinical trials and research studies on rare pediatric diseases are limited. Without sufficient data, it is challenging to develop new treatments or understand long-term outcomes (Global Genes, 2021).
The Role of Advocacy in Transforming Pediatric Rare Disease Care
Advocacy has the power to change the landscape of rare pediatric diseases, driving progress in research, policy, and patient support. Here’s how:
1.
Raising Awareness and Education
Many rare diseases remain unknown to the general public and even healthcare professionals. Advocacy groups work to educate medical communities, legislators, and the public on the importance of recognizing symptoms early and ensuring timely interventions. Campaigns such as Rare Disease Day and patient-led initiatives help bring visibility to these conditions (EURORDIS, 2023).
2. Driving Policy Changes
Policymakers play a crucial role in ensuring access to care and funding for research. Advocacy organizations push for legislation that supports rare disease patients, such as: Increased federal and private funding for rare disease research (National Institutes of Health, 2022).
Streamlined approval processes for orphan drugs and gene therapies (U.S. Food & Drug Administration, 2021). Expanded newborn screening programs to detect rare diseases earlier (American College of Medical Genetics and Genomics, 2020).
Advocates also work to ensure that pediatric patients have access to appropriate healthcare services, insurance coverage, and educational accommodations.
Pediatric Rare Diseases: The
3. Accelerating Research and Innovation
Patient advocacy groups often collaborate with researchers and pharmaceutical companies to advance clinical trials. Patient registries—databases of individuals diagnosed with a specific rare disease—help scientists collect vital information that can guide treatment development. Organizations like the National Organization for Rare Disorders (NORD) and Global Genes have been instrumental in funding research and promoting collaboration between stakeholders (Global Genes, 2022).
4. Empowering Families and Patients
Parents of children with rare diseases often become their strongest advocates. Support networks and advocacy groups provide families with resources, connect them with specialists, and assist in securing financial aid. Peer-to-peer support systems help families navigate the emotional and practical challenges of raising a child with a rare disease (Pelentsov et al., 2016).
Case Study: Success in Pediatric Rare Disease Advocacy
A prime example of successful advocacy is the passage of the Orphan Drug Act (ODA) in 1983, which incentivized drug development for rare diseases. This law led to significant advancements, including the approval of more than 600 orphan drugs, many benefiting pediatric patients (U.S. Food & Drug Administration, 2020).
Another success story is spinal muscular atrophy (SMA) advocacy. Patient groups successfully lobbied for newborn screening programs and expedited drug approvals. Today, SMA patients have access to gene therapies that can significantly improve their quality of life (Cure SMA, 2021).
Pediatric Rare Diseases: The Opportunity for Advocacy to Transform Care cont'd
The Future of Pediatric Rare Disease Advocacy
The landscape of rare disease advocacy is evolving, with several promising developments:
Gene and Cell Therapies – Advancements in gene editing technologies, such as CRISPR, offer hope for treating previously untreatable rare diseases (National Institutes of Health, 2023).
Artificial Intelligence (AI) in Diagnosis – AIdriven tools are helping shorten the diagnostic odyssey by identifying rare diseases earlier through medical imaging and genetic analysis (Shah et al., 2022).
Global Collaboration – International partnerships between advocacy groups, research institutions, and policymakers are expanding access to treatments and improving patient outcomes (EURORDIS, 2023).
Pediatric rare disease advocacy is a vital force in ensuring that children with rare conditions receive timely diagnosis, effective treatment, and comprehensive support. By raising awareness, driving policy changes, fostering research, and empowering families, advocacy can transform the future for these vulnerable patients. Continued collaboration among patient organizations, researchers, healthcare providers, and policymakers is essential to create a world where no child is left behind due to a rare disease.
Every voice in advocacy matters—whether you are a parent, healthcare professional, researcher, or policymaker, your efforts can contribute to a brighter future for children with rare diseases. Now is the time to act, advocate, and advance progress in pediatric rare disease care.
Global Partners
The My Blood My Health program is dedicated to empowering individuals affected by Hematological issues by providing trusted education, advocacy, and support. Through patientcentered resources and expert collaborations, we strive to enhance awareness and improve access to critical information for those navigating their blood health journey. Stay tuned for the next edition of the My Blood My Health digital magazine, coming in March, featuring insightful articles, patient stories, and the latest updates in hematology
Heal Canada and Pat ADV Hub in the USA have embarked on a collaborative journey, aiming to revolutionize the realm of patient advocacy across North America. This pioneering partnership brings together two influential organizations from neighbouring countries, combining their extensive expertise and resources.
The objective is to expand and enhance the access to critical information for patient advocates, ensuring that individuals across the continent receive the best possible support and guidance in their healthcare journeys.
By bridging the gap between Canadian and American healthcare advocacy, this alliance promises to foster a more informed, empowered, and connected community of patient advocates, significantly contributing to the improvement of healthcare experiences for countless individuals.
patadvhub@gmail.com www.patadvhub.org
Advocacy Spotlight
The "Advocacy Spotlight" section of Heal Canada Digital Magazine is a dynamic platform dedicated to shining a light on patient advocacy groups, both new and established. This unique feature aims to introduce these vital organizations to a broader audience, highlighting their missions, achievements, and the critical support they offer patients and their families.
Each edition of this segment meticulously selects a different group, delving into their specific focus areas, ranging from rare diseases to everyday health challenges. Heal Canada amplifies these groups’ voices and fosters a deeper understanding and connection within the broader healthcare community by showcasing their stories, initiatives, and community resources.
This section is more than just an informational piece; it celebrates these advocacy groups’ tireless efforts and significant impact and empowers readers by connecting them with valuable resources and support networks.
The Role of Patient Advocacy Groups
by Dr. Raymond Rupert
LessonsfromtheFrontLines
Patient advocacy isn't just about standing up for patients - it's about knowing when to stand firm, whentopushback,and,mostimportantly,howto get results. After years in the trenches of patient advocacy, I've learned that success often comes down to a few critical principles that can make or breakacase.
ThePowerofGettingitRightfromtheStart
The first and most crucial step in patient advocacy is recognizing and accurately stating the real problem. This sounds simple, but it's where many advocacy efforts go wrong Let me shareacasethatdemonstrateswhythismatters
Case Study: The Impact of Strategic Documentation
Casey was a complex 15-year-old with an eating disorderandsignificantmentalhealthchallenges. She had been adopted from Europe at 11 months and had always been a challenging child. When a large teaching hospital wanted to discharge her after just two days of stabilization, we knew we hadtoactfastandactsmart.
Here's what we did: We put the hospital on notice with a carefully crafted briefing document. Thiswasn'tjustanyletter-itwasastrategicdocumentthatwenttoeveryonewhomattered:the most responsible physician (MRP), the team lead, the nurse in charge, the unit's social worker, and the hospital CEO Most importantly, we made sure it became part of the medical record Why?BecausewhenCaseywouldinevitablybereadmitted,thenewteamwouldunderstandher complexityfromdayone.
Theresult?AcompleteturnaroundinCasey'smanagement.Notonlydidtheyhaltthepremature discharge, but with our advocacy team's intervention, we secured her admission to a long-term residential care facility in just four days - not the usual 4-5 weeks. That's the power of knowing howtoworkthesystemeffectively.
Evidence-Based Advocacy: It's Not Just What You Say, But How You Say It
Let me be clear: coming to a doctor's office with 200 pages printed from Dr. Google won't get you anywhere. It could damage the doctor-patient relationship, which is fragile at best. But that doesn't mean we can't use evidence effectively.
The
Role of Patient Advocacy Groups cont'd
CaseStudy:PresenttheEvidence
Take the case of Mr. Jose H., an 80-year-old fighting advanced COVID pneumonia in the ICU. He was critically ill, requiring 100% oxygen, and the situation was deteriorating. Early in his treatment, he had received dexamethasone for his COVID pneumonia, but as his condition worsened, we needed to consider additional options When we suggested restarting dexamethasone,theICUstaffagreed-butthatwasjustthebeginning
The family then requested the use of remdesivir, an antiviral medication. The ICU Medical staff immediately pushed back, claiming it was "too late" in the disease course. But here's the thingtheyhadnevertriedremdesivirwithMr.Hinthefirstplace.Insteadofgettingintoanargument, wetookadifferentapproach.Welocatedandemailedapublishedresearcharticledirectlytohis treating doctors, demonstrating the potential benefits of remdesivir even in later-stage COVID pneumonia.Theliteraturedirectlycontradictedtheirassumptionsabouttiming.
The Keys to Effective Advocacy
This is where the art of advocacy comes in - we didn't just challenge their decision; we provided them with the scientific evidence they needed to change their minds. We presented the research professionally, made our case clear, and guess what? They changed their approach. This case perfectly illustrates why you must be persistent, back your arguments with solid evidence, and always maintain professional relationships with the medical team.
Through years of experience, I've learned these essential truths about successful patient advocacy:
The Power of the Briefing Document: Don't just complain - document. A well-crafted briefing document that becomes part of the medical record can change the entire trajectory of a case. It puts everyone on notice and creates accountability.
Building an Integrated Team: Complex cases have many moving parts that need to work together. Solving one problem doesn't solve all problems. To create real solutions, you need to coordinate between different healthcare providers, family members, and institutions.
3
The Art of Persistence: Be persistent and firm but never impolite. Hostility of any kind will shut down communication faster than anything else. I've learned that you can be assertive without being aggressive.
Following the Science, Not the Hype: Design the solution you want, then see if the science supports it. Follow the evidence, not the hucksters. This means spending time in the published literature and understanding what the research really says.
The Role of Patient Advocacy Groups cont'd
Asking Better Questions
One strategy that consistently works is learning to ask better questions. Instead of overwhelming healthcare providers with internet printouts, engage them with informed, specific questions backed by current research. This approach tends to open doors rather than close them.
The Future of Patient Advocacy
As healthcare becomes more complex, the role of patient advocates becomes even more critical. We're seeing new challenges emerge:
Increasingly complex treatment options requiring deeper medical knowledge
The need to navigate between multiple specialists and institutions
Insurance and payment systems that seem designed to confuse
The challenge of accessing new treatments and clinical trials
But here's what I've learned: No matter how complex the system becomes, the basics of good advocacy remain the same: Be persistent, be professional, be prepared, and most importantly, neverlosesightofwhatmatters gettingthebestpossibleoutcomeforyourpatient
Theroleofpatientadvocacygroupsisn'tjustaboutfightingthesystem-it'saboutknowinghow toworkwithiniteffectivelywhilepushingfornecessarychanges.It'saboutunderstandingwhen to push hard and when to step back, when to bring in the evidence and when to listen. Most of all, it's about knowing that every case is unique and requires its own approach to achieve the bestpossibleoutcome.
Dr. Raymond Rupert
Dr. Rupert combines four decades of primary care experience with business innovation in healthcare delivery. After completing his MBA from the University of Toronto, he founded RCM Health, building a global network of 4,000+ specialists and pioneering integrated complex care solutions. Now, as CEO and Founder of Healtheon, Dr. Rupert is transforming Canadian primary care through innovative technology and team-based approaches. His vision creates sustainable healthcare solutions that enhance public system delivery while offering optional wellness plans, making quality care accessible to all Canadians.
Providing Accommodation Access to Healthcare For Every Canadian: StayWell Suites Charity
Imagine being forced to choose between life-saving medical care and the financial burden of relocatingtoTorontotoaccessit.Thisistherealityformanypatients,alongsidetheircaregivers and family who must travel far from home to receive critical treatment. The added challenge of securing safe, affordable housing in an unfamiliar city often makes an already difficult journey evenharder.Thisfinancialburdenmayforcepatientstoeitherdelayorforgonecessarymedical care.
ThisiswhereStayWellSuitesCharitystepsin.
StayWell provides affordable accommodations to Canadians who must relocate for medical treatment. Through partnerships with major hotel chains and professional furnished apartment providers, we offer subsidized patient rates, alleviating the financial burden and ensuring patients can stay close to hospitals, alongside their caregivers and family, while receiving treatment
The inspiration for StayWell Suites Charity came from the personal experience of Tina Proulx, a patient from Ottawa, who faced a similar challenge in 2015. Diagnosed with a rare, lifethreateningdisease,TinaneededadoublelungtransplantatTorontoGeneralHospital,over400 kilometres from her home in Ottawa. In Toronto, the areas surrounding the hospitals are amongst the most expensive in the city. Tina and her husband Joel decided to make the move and had to take leaves of absence from work – they found themselves living in one of the most expensivecitiesinthecountrywithoutanyincome.
Matt Regush, a partner at Sky View Suites, learned of Tina's relocation challenges in the fall of 2015, when her family inquired about furnished accommodations and instantly provided them with a fully furnished unit at a reduced cost. This encounter led to the creation of StayWell Suites Charity. “If you cannot afford to live in Toronto and you’re making the choice not to accept treatment, then you are basically making the choice to die” says Tina, reflecting on her experience In December 2015, Tina received her transplant and made a full recovery, inspiring StayWell’smissiontohelpotherpatientsfacingthesamechallenges
From our start in 2018, providing three patients of the Princess Margaret Cancer Centre, including their families and caregivers, with 135 nights, we have grown significantly. By the end of 2024, we will have supported over 5,500 patients with over 90,000 room nights across all major hospitals in Toronto. Patient stays range from a few days to over a year. Earlier this year, we concluded an agreement with the SickKids Foundation to provide $250,000 in accommodationsupportoverthenextfiveyears.
From our start in 2018, providing three patients of the Princess Margaret Cancer Centre, including their families and caregivers, with 135 nights, we have grown significantly. By the end of 2024, we will have supported over 5,500 patients with over 90,000 room nights across all major hospitals in Toronto. Patient stays range from a few days to over a year. Earlier this year, we concluded an agreement with the SickKids Foundation to provide $250,000 in accommodation support over the next five years.
Looking ahead, StayWell will expand to other cities across Canada in 2025, continuing to rely on the support of dono s and partners to fill the gap between accommodation costs and what patients can afford. StayWell Suites Charity is committed to providing safe, affordable accommodations to patients, along with their caregivers and family, during their medical journey. Your support can make a life-changing difference for families like Tina’s, ensuring that no patient has to choose between their health and affordable accommodations.
Patient Journey's
The "Patient’s Journey" section of Heal Canada Digital Magazine is close to our hearts. This magazine is dedicated to patients and caregivers. We are proud to offer a platform to our community so that we can share, learn, and grow together. Here, patients can share their experiences and empower readers by connecting them with our Heal Canada community. By doing so, we can understand that whatever the situation we face, we are not alone! United, we stand in Advocacy!
Two years post liver transplant: what have I learned
by Alice Williams, Volunteer Patient Partner, Wilson disease and organ donation advocate
In December 2022, I had just retired from a 30+ year career in corporate communications and waslookingforwardtoafuturewithgolf,pickleballandtravel classicretirementactivities Our two children (son 23 and daughter 20) were successfully launched My son had finished university and had a good job. My daughter was in her second year university studying economicsanddoingwell.MyhusbandandIcongratulatedourselvesonwhatagreatjobwehad doneraisingourkids.
Then,thewallscavedin.
My daughter came home from university feeling very tired, bloated, nauseous and weak. I thought maybe she has irritable bowel syndrome, burnout from studying for exams, the freshman15weightgain,herappendix,gallbladder?
She suffered through the holidays and slept a ridiculous amount The fluid was getting more pronounced in her abdomen, and she started vomiting at random. A visit to our family doctor, who took some blood work and an ultrasound showed fluid in her abdomen and elevated liver enzymes. “Let's monitor and test again in a month,” our doctor advised. I realize now that if we hadwaited,shemightnotbehere.
After the holiday break, my daughter insisted on going back to university to start the winter semester. I suggested she stay home so we could arrange for more tests, but she was eager to getbacktoschool.Shedidagreethatifthesymptomsworsenedordidn’timprove,shewouldgo toemergency.Twodayslater,shedidjustthat.Littledidweknowthatshewasatendstageliver disease. Fast forward a month later and she was back at home in Toronto with her new, transplantedliver.
Two years post liver transplant: what have I learned cont'd Tosaywewereblindsidedisanunderstatement.
Atemergency,doctorsquicklydiagnosedherwithWilsondiseasewithinafewdays.Herliverwas so damaged that it couldn’t be saved. She needed an emergency liver transplant. I will never forget the doctor’s words. “It’s the only lifesaving option at this point.” I was frozen and numb. How could this happen to an otherwise healthy young woman who didn’t do drugs, didn’t drink much,workedoutandatewell?Wewerelucky Mydaughterwasputatthetopoftheprovincial transplant list in Ontario and received her new liver within 10 days of her Wilson disease diagnosis I am forever grateful to her anonymous, deceased donor and their family, who made thedecisionintheirunimaginablegrieftogivebackanddosomethingcompassionate. Theysavedmydaughter'slife.
Shortly after my daughter received her transplant, we had her brother tested, which confirmed thathe,too,hasWilsondisease Hisliverdamageisn’tassevereashissister,andheiscurrently receivingtrientine,whichseemstobeslowlyhelping
As I write this, my daughter just celebrated her two-year anniversary with her new liver. She seems to like it, and it seems to like her. I am enormously proud of how she has navigated the new normal and is living her life as a young woman, now with the knowledge that she had a diseaseherentirelifeandhasatransplantedliver.Ialwaysknewshewasstrong.Ineverrealized thatshewouldbetestedlikethisbutshehasshownmehowstrongshereallyis.
So what have I learned two years later from one of the worst experiences our family has had? I havelearnedthatyoucanfacethethingsyoufearthemost almostlosingyourchildandyour child having a rare disease and come out the other side a little bruised, beaten, worn done andforeverchangedbutstillpositive,joyfulandhopeful.
It hasn’t been easy. I think I have cried enough tears to fill Lake Ontario. As their mom, from the day they were born, my primary job was to keep them safe and healthy. I thought I did all the rightthings dentistandeyeappointments,doctorvisits,vaccines,fruitsandvegetables,swim lessons, etc As much as I tried to nurture them and help them grow into healthy, confident adults, I couldn’t protect them from genetics and the defective gene that their father and I unknowinglygavethem
Two years out, I am thankful and hopeful. The only thing worse than getting bad news if feeling that you are alone. And in the first days and weeks of my daughter’s transplant and my son's diagnosis, I did feel alone very alone. So, I did what most of us do when we are thrown into unchartedwaters.IturnedtoDr.GoogleandsearchedforinformationaboutWilsondisease.
Two years post liver transplant: what have I learned cont'd
That conversation led to countless more. These past two years, I have met people across Canada,theUSandaroundtheworld virtuallyandinperson patients,caregivers,advocates, and physicians. Each has given me knowledge, re During my search, I discovered the Wilson Disease Association and various Facebook support groups. I reached out blindly, hoping someone would message me back and tell me that it’s going to be okay. WDA co-founder and boardmemberCarolTerry(atruepioneerintheWilsondiseasecommunity)wasoneofthefirst people to reach out to me. She was kind, reassuring and very informative. I didn’t feel so despondentandafraid.
Assurance and a sharper perspective on Wilson disease And I have tried to do the same for peopleImeet
Two years later, I have chosen to take my worry, frustration, anxiety and angst and channel it intosomethingmorepositive.Worryingwhethermykidstooktheirmedsoraredrinkingenough waterisn’thelpfultothemtome.ThereismoreIcandoastheirmother.
I have joined the board of Wilson Disease Association (WDA), created a Canada chapter, and joined the board of the Canadian Organization for Rare Disorders (CORD). I volunteer as a PatientPartnerwiththeUniversityHealthNetwork(UHN),acollectionoffourteachinghospitals inToronto,myhometown.
Any chance I get to talk to med students or new physicians about Wilson disease, I grab the opportunity. I am hopeful that they will remember meeting me and the next time they have a challengingdiagnosis,theywillconsiderWilsondisease
The more I learn about Wilson disease, the more hopeful I am It’s treatable, albeit it’s a lifelong treatmentprogram.Clinicaltrialsareunderway.AdoctorwhotreatsWilsondiseasepatients,Dr. Silhoun Hahn, has developed an assay to add Wilson disease in the newborn screening panel. This gives me great hope. If we could diagnose Wilson disease in infants, this could be a game changerandendsomanyyearsofsufferingandanguishforpatientsandtheirfamilies.Ibelieve that in my son’s lifetime, there may be a cure, certainly more and better treatment options for Wilsondisease.
My children and our family are forever changed by my son’s diagnosis and my daughter’s liver transplant. As much as I feel it has closed some doors for them, it has opened so many others, too, for all of us.
gIn this vibrant corner of Heal Canada Digital Magazine, we're excited to introduce you to our "Living Well" section – a treasure trove of inspiration and guidance for those seeking a healthier, happier, and more balanced life. Our mission is to empower you with expert insights, the latest health trends, and personal wellness stories that resonate with real-life challenges and triumphs.
Here, we explore the many facets of well-being, from nourishing your body with wholesome nutrition to rejuvenating your mind through meditation and mindfulness. You'll find practical advice on exercise, mental health, and preventive care, all tailored to fit into your busy lifestyle.
But "Living Well" is more than just a guide; it's a community. We encourage you to engage with us, share your journeys, and learn from others who are on similar paths. Whether you're taking the first steps towards a healthier you or are further along your journey, we're here to support and inspire you at every turn.
"Living Well" will provide topics that matter the most to your health and happiness. Let's celebrate the joy of living well together!
Clean Eating Tips for Busy People: Nourish Your Body, Elevate Your Energy
by Sue Lemoine, RNHP
Life moves fast, and when you’re constantly juggling responsibilities, healthy eating often takes a backseat. Grabbing a quick burger, skipping meals, or reaching for that second (or third) coffee may feel like a necessary tradeoff for productivity. But here’s the truth: what you eat directly affects how you feel, think, and perform.
When you fuel your body with the right nutrients, you boost energy, sharpen focus, and support long-term health—without needing drastic changes. Clean eating isn’t about perfection. It’s about making simple, intentional choices that align with your lifestyle. Here are ten practical tips to help you eat well, even on your busiest days.
1.
Plan for Success
The saying is true: Fail to plan, and you plan to fail. Take just 10 minutes each night to map out your meals and prep what you can. Whether it’s washing veggies, portioning snacks, or making overnight oats, a little prep goes a long way in keeping you on track.
2.
Shop with Intention
Never do your grocery shopping on an empty stomach! Hunger leads to impulse buying, making you more likely to grab processed, convenience foods. Instead, stick to a list filled with whole foods—lean proteins, fresh produce, whole grains, and healthy fats.
3. Snack Smart
When hunger hits, what’s within reach? Instead of vending machine temptations, stock up on nutrient-dense snacks like fresh fruit, nuts, seeds, and hard-boiled eggs. These foods provide steady energy without the sugar crash.
4. Load Up on Vegetables
Vegetables should be the star of your meals. They’re packed with vitamins, minerals, and fiber that keep you full and energized. If cooking feels overwhelming, opt for prechopped, frozen, or ready-to-eat options like cherry tomatoes, baby carrots, or prewashed greens.
5. Prioritize Lean Proteins
Protein is key for muscle repair, metabolism, and sustained energy. Instead of processed meats, choose lean sources like chicken, turkey, fish, eggs, tofu, and lentils. Keep cooked protein on hand for easy mealbuilding.
6. Upgrade Your Coffee Habit
Fancy coffee drinks can add hundreds of unnecessary calories to your day. Try swapping sugarladen lattes for black coffee, herbal tea, or a homemade matcha latte. Investing in a thermos flask allows you to bring your own healthier version on the go.
7. Make Smoothies Your Best Friend
A smoothie is the ultimate fast food when done right! Blend together fruits, leafy greens, protein powder, and healthy fats for a nutrient-packed meal in minutes. Pre-pack smoothie ingredients in freezer bags to make mornings effortless.
8. Use Your Freezer Wisely
Busy weeks call for batch cooking. Prepare a large pot of soup, chilli, or stir-fry, then freeze individual portions. When time is tight, you’ll have a homemade, nourishing meal ready to go—no drive-thru needed.
9. Choose the Best Option Available
Sometimes, fast food is unavoidable. In those moments, make the best possible choice: opt for a grilled chicken salad instead of a burger, a protein-rich snack over chips, or water instead of soda. Every better choice counts!
10. Stay Hydrated
Dehydration often feels like hunger, leading to unnecessary snacking. Keep a refillable water bottle with you and sip throughout the day. Adding lemon, cucumber, or mint makes it more refreshing! Your aim is to drink half your body weight in ounces of water (ie if you are 140 pounds, drink 70 oz of water per day).
Small Steps, Big Impact
Eating well doesn’t have to be overwhelming. Small, consistent choices create lasting results. By planning ahead, keeping nutrient-rich foods on hand, and making better choices when needed, you’ll feel stronger, more focused, and ready to take on whatever life throws your way.
Want more support in building healthy habits that fit your busy life? I’d love to help! Email me at Sue@flourish-nutrition.ca, and let’s make clean eating effortless for you.
The Smile File
Something to make you laugh and smile!
SO... YOU SAY YOU'RE ACCIDENT-PERSON?
Welcome to the "Ask the Professional" section of Heal Canada Digital Magazine, a dedicated space where curiosity meets expertise in the realm of healthcare.
In our pursuit to empower patients and their advocates with knowledge, this section bridges the gap between medical professionals and our readers, offering clear, accurate, and practical answers to your most pressing questions. Whether you're navigating the complexities of clinical trials, seeking advice on managing chronic conditions, or exploring the latest in wellness trends, our experts are here to provide you with insights grounded in the latest research and clinical experience.
Let's embark on this journey of understanding together, fostering a community where informed decisions lead to better health outcomes.
Ask the Professional
Maureen Carpenter, BSC, RN, CD provides her insight
What are some practical steps nurses can take to ensure that patient needs and preferences are prioritized in care plans?
Practical steps toward identifying a patient’s needs will begin with talking to the patient and evaluating their knowledge base and possible lack of insight with regards to the diagnosis and the treatment plan.
Useplainlanguageinaclearandtransparentdelivery,allowingatwo-wayconversation.Askthe patient to explain to the advocate their take on what they have been told to that date. If a patient can put into words their impression of the information received, a starting point will be established to build on the avenues needed to guide this person successfully. Once knowledge deficits and support needs can be recognized, information gathering and teaching can be more effective.
Enhancing advocacy abilities can be achieved by becoming knowledgeable of legislations, treatments, disease processes and outcomes of the health issues their clients are facing Awareness of the possible barriers a patient can experience will help in avoiding these and developingasmootherjourneythroughthesystem
How do you see the role of patient advocacy evolving with the increasing use of technology in healthcare, such as telemedicine and health apps?
Technology is constantly evolving just as the world constantly turns. Telemedicine has grown since the pandemic where contactless interactions were legislated as the norm of the time. Access to telemedicine will greatly improve accessibility to those who may live remote or rural. This availability may empower a patient as they will have more control and feel more validated when concerns, for example, are discussed in a timely manner. Telemedicine can also reduce wait times for consults since this can be done remotely.
Patients often feel vulnerable when ill. Telemedicine may help lower barriers induced by feeling exposed or vulnerable. An added bonus is when a patient is able to access their health information leading to more active engagement in care. A hurdle with telemedicine would be to have the patient buy into this type of care. The physical presence of a clinician may help ground a patient who is not dealing well or having difficulty absorbing all the information. Non-verbal cues can be missed with telemedicine and a patient may leave an appointment with more anxiety due to missed indicators.
Health apps have both pros and cons, as do all things in life. Most individuals today own smartphones and have health apps that monitor their steps, heart rate, etc. Some apps allow access to lab results, diagnostic reports, and prescription medications. Many provinces in Canada have developed programs delivered in an app for residents to log on and see their health information. The convenience alone is empowering and can lead people to a better understanding of their medical needs and lead to improved healthy behaviours and accountability for their health. Some health apps do provide educational options in the terminology, anatomy, and identification of prescription drugs. The cons to health apps include a lack of data privacy where a person’s birth date, full name, home address, etc, can be included on these sites. Information accuracy is another concern, such as measuring a person’s heart rate, stress responses, or blood pressure. There is also a lack of regulation for these apps, which covers the concern about the accuracy of readings. www.dignityhealth.org
What challenges do healthcare professional face in balancing cost-efficiency with ensuring high-quality, patient-centered care, and how can patient advocacy help overcome these challenges?
Balancing cost-efficient, high-quality care has been studied exhaustively around the globe. In Canada, over half of the health spending is consumed by three areas. According to the Canadian Medical Association, these areas are hospitals at 26%, drugs at 14 % and physicians at 14%. However, Canada’s healthcare system continues to experience challenges of significance in two of the above-noted areas. Health Canada reported that overwhelmed emergency rooms and the lack of family doctors or access to the same had created an enormous strain on healthcare workers. While Canada’s healthcare is publicly funded, challenges with funding create obstacles for patients to receive timely care.
More family physicians or increased numbers of Primary Care facilities can help ease the burden generated by emergency department overuse. www.canada.ca/en/health-canada.html
Valuebasedcareinnursingisafocusontheholisticaspectofpatientcare Thisconceptofcare has been within the nursing undergrad university program for over twenty years in Canada The holistic framework for care was a baseline within the different care models covered This is an approachtocarewithafocusontheindividualasawholepersonratherthanfocusingsolelyon the disease or health issue. Value-based care emphasizes an integrated model of care which addresses the person’s physical, mental, behavioural and social needs in health care. The word valueinvalue-basedcarecanrefertowhatthepatientvaluesmost.
To effectively care for a person within this model is to ensure that all aspects of a patient’s wellbeing are explored and considered when developing the care plan and guiding the patient throughtheirhealthcarejourney.
For a nurse to effectively advocate for a patient within the value-based care system, they must explore the above aspects of that person. Asking questions, active listening, engaging and supporting the patient will increase the advocate's understanding of the needs or deficits this person needs to be addressed for successful care. “Maximizing patient engagement is essential for the success of value-based care models. By prioritizing, collaboration, communication, shared decision-making, and a patient-centred environment, healthcare organizations empower patientstotakeanactiveroleintheirhealthcare.”www.chenmed.com
In your experience, what impact does strong patient advocacy have onpatientoutcomes andtheoverallhealthcareexperience?
Strong patient advocacy will affect so many aspects of a person’s journey.Asapatientnavigatesthroughtheirprocesswiththeaidofan advocate, they will be less likely to miss appointments, experience medical errors, have misunderstandings of medical instructions or advice, or fall behind in timely treatment schedules The advocate having a firm knowledge base with regards to the disease or diagnosis willbeeffectiveindevelopingtrustwiththepatientorclient Astrong advocate can guide a patient toward a goal without doing the work thatshouldorcouldbecompletedbythatpatient.
Empowering a patient to navigate their journey is essentially what the advocate is working toward. When a patient feels heard, they feel validated, and their motivation will increase. Patients become able to makeinformeddecisionsabouttheirtreatmentandcare.Avoidanceof unnecessary hospitalizations can be a definite indicator of positive outcomesduetostrongadvocacy.www.cms.gov
Your resources
Patients, caregivers, Patients organizations, Healthcare professionals and other stakeholders, we want to help you.
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1. Global Genes. (2023). Rare Disease Diversity Coalition Report. Retrieved from https://globalgenes.org
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Farooq, F., Hargreaves, P., & Hughes, J. (2021). Addressing health disparities in sickle cell disease: A need for increased funding and research. Journal of Hematology Research, 34(2), 67-75.
NORD. (2022). Bridging the gap: Health equity initiatives in rare diseases. Retrieved from https://rarediseases.org
Ortiz, A., Oliveira, J. P., Waldek, S., Warnock, D. G., & Cianciaruso, B. (2019). Fabry disease in diverse populations: Diagnostic challenges and treatment considerations. Nephrology Reviews, 15(4), 210-218.
4. U.S. Food and Drug Administration (FDA). (2023). Rare Diseases Diversity Initiative. Retrieved from https://www.fda.gov
6. Cure SMA (2021). Advances in Spinal Muscular Atrophy research and therapies.
American College of Medical Genetics and Genomics (2020). Newborn screening recommendations.
EURORDIS (2023). Rare Disease Day and advocacy efforts.
Global Genes (2021). The state of rare disease research.
National Institutes of Health (2022). Funding for rare disease research.
National Institutes of Health (2023). Gene editing and its potential in rare diseases.
Pelentsov, L. et al. (2016). The emotional and financial burden of rare diseases on families.
Shah, R. et al. (2019). Delayed diagnosis in rare diseases. 13. Shah, R. et al. (2022). AI in rare disease diagnosis.
U.S. Food & Drug Administration (2020). The impact of the Orphan Drug Act.
U.S. Food & Drug Administration (2021). Policies to expedite rare disease drug approvals.
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Heal Canada Team
Brigitte Leonard, Ph.D
Brigitte Léonard is the Chief Scientific Officer at Heal Canada. She had the privilege of working in Pharma for over 20 years, contributing to bringing life-changing treatments to patients with the highest ethical standards. Now, she wants to share her knowledge and utilize her scientific, strategic, and communication skills to help the patients’ community.
She obtained her Ph.D. in Biomedical Sciences from Université de Montréal in 2003. Her doctoral research was conducted at Maisonneuve-Rosemont Hospital Research Center. She developed a quantitative diagnostic assay in non-Hodgkin's lymphoma and evaluatedtherelevanceofthismarkerinthepatient'soutcome.
Wendy Reichental, B.A.
Wendy Reichental, Program Manager, Heal Canada. Wendy holds a B.A. and a Diploma in Human Relations and Family Life Education from McGillUniversity.Sheiscertifiedinfootreflexology.
Throughout her career, she has showcased her insightful perspectives through her writings, which have appeared in publications such as The Montreal Gazette and Ottawa's Globe and Mail. She has also contributed to specialized platforms like Booming Encore and Refresh Reflexology Magazine, demonstrating her versatility in addressing diverse audiences. Her unique observation on the initial days of the pandemic lockdown is captured in the anthology Chronicling the Days: Dispatches from the Pandemic, published by Guernica Editions in the springof2021.
Cheryl Petruk, MBA B.Mgt.
Cheryl A. Petruk is a multifaceted professional whose career spans patient advocacy, business, and post-secondary education, showcasing herdedicationtosignificantlyimpactingtheseareas.
Family circumstances drove her transition into patient advocacy. During the last 15 years, she has worked tirelessly to bridge the gap between the healthcare system, patients, and pharma stakeholders. Her empathetic approach and dedication to advocacy have made her a respected figure in this field. She lobbies for a healthcare system based on patient-centricity. She supports other patient organizations in becoming better advocates by leading Heal Canada and CACHEducation.CherylhasrecentlyachievedhergreenbeltinVBHC.
