Day 3 | September 14, 2024
STAY UP TO DATE ON ALL THINGS BDC
BLEEDING ORG/BDC-CONNECTIONS
Charting New Waters in Women's Bleeding Disorders Care
At the Bleeding Disorders Conference, a pioneering session led by Dawn Rotellini of the National Bleeding Disorders Foundation put women's health in the spotlight. The panel introduced a game-changing concept: WGPPM (Women, Girls, and People with Potential to Menstruate), signaling a shift towards more inclusive care.
Experts, ranging from pharmaceutical leaders to those with lived experiences, outlined three crucial focus areas: enhancing treatment access, amplifying awareness and education, and dismantling stigma. These pillars form the bedrock of a reimagined care strategy for women with bleeding disorders.
Carrie Funkhouser from the Foundation for Women and Girls with Blood Disorders unveiled innovative initiatives, including professional education programs and a comprehensive menstruation toolkit. These resources aim to empower healthcare providers with the knowledge to navigate
Making Change for WGPPM with Bleeding Disorders Friday,September13th,4:00pm-5:00pm
the unique challenges of women's bleeding disorders.
The session concluded with a clear and optimistic outlook for the future of women's bleeding disorder care. Experts emphasized that ongoing research and open dialogue are driving significant improvements in treatment and understanding.
Rotellini stated, "We're witnessing a paradigm shift in how the medical community approaches women's bleeding disorders. With continued effort and collaboration, we can ensure that every patient receives the comprehensive care they deserve."
This renewed focus on women's health in bleeding disorders represents a major step forward in addressing a long-overlooked aspect of hematology. As awareness grows and new treatments emerge, patients and healthcare providers alike are looking forward to a future where these conditions are better understood and more effectively managed.
Patient Voices Lead the Charge: A New Era in Bleeding Disorders Research
Lived Experience Experts
At the recent National Bleeding Disorders Foundation conference in Atlanta, a revolutionary approach to medical research took center stage The National Research Blueprint (NRB) is set to transform how we understand and treat bleeding disorders, with patients themselves at the helm
Gone are the days of research confined to sterile labs The NRB brings the process into the living rooms of those who matter most: the patients "We're not just subjects anymore," says Sammy Thompson, a conference attendee living with hemophilia "We're partners in this journey "
Dr Sarah Johnson, lead coordinator of the NRB, outlined the initiative's three-phase plan:
Define research priorities, develop infrastructure for patient participation, and implement the strategies "This isn't just about finding better treatments," Dr Johnson explains "It's about understanding the entire journey of living with a bleeding disorder "
The heart of this revolution lies in the introduction of Lived Experience Experts (LEEs) These individuals, living with bleeding disorders, are now active participants in every stage of research Their involvement ensures that the right questions are being asked and the most relevant answers are being sought
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Patient Voices Lead the Charge
Guided by principles of people-centricity, collaboration, health equity, and diversity, the NRB is broadening the scope of research It goes beyond basic science, tackling areas like improved diagnostics, adaptive therapeutics, and health equity challenges.
As the conference wrapped up, attendees eagerly signed up for the CommunityBased Research registry and advisory panels The excitement was palpable, with Dr. Johnson concluding, "This is just the beginning. We're not just changing research we're changing lives."
For those living with bleeding disorders, this new approach offers more than hope It provides a voice and a hand in shaping their own futures As the medical community watches closely, the NRB may well become a model for patient-centered research across all fields of medicine.
H I C A G O , I L 25 O C T O B E R 2 0 2 4
Breaking Barriers: How LEEs are Shaping Bleeding Disorders Research Friday,September13th,1:30pm-2:30pm GWCC | B305 - Level 3
Thriving Beyond the Bleed: The T.H.R.I.V.E Campaign Empowers Community
At this year's Bleeding Disorders Conference, a groundbreaking initiative took center stage: the Thrive campaign Developed in collaboration with the CDC, this nationwide effort aims to empower individuals with bleeding disorders to live life to the fullest
Dr Michael White from Emory University and Erica, a parent advocate, introduced the campaign's holistic approach "Thriving isn't just about managing bleeds," Dr White emphasized "It's about addressing the whole person mind, body, and spirit "
The Thrive campaign outlines six key steps for a healthy life with a bleeding disorder, ranging from regular healthcare to embracing the bleeding disorders community What sets this initiative apart is its grassroots origin, developed through community surveys and discussion groups
"We found that many in our community were particularly anxious about inhibitors," shared the Director of Education and Media "But we also discovered a need for tools to start conversations with healthcare providers and a more comprehensive approach to health "
Conference attendees explored a variety of Thrive campaign materials, from brochures to interactive online tools Erica noted, "Having these resources at our fingertips will make a world of difference for families like mine "
As the campaign launches, the community is encouraged to share their own thriving stories The Thrive campaign represents a significant shift from simply managing a condition to embracing a full, vibrant life As Dr White aptly put it, "We're not just surviving anymore We're thriving "
For more information and to access materials, visit the Thrive campaign website on bleeding org
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Georgia World Congress Center Building B
BDefine Us: Teens Take Charge of Their Future at #BDC2024
At the recent Bleeding Disorders Conference, a powerful session shed light on the unique challenges faced by teens transitioning to adulthood while managing their condition. The message was clear: with the right tools and support, these young adults are more than capable of thriving
"It's not just about managing bleeds anymore," shared Shawn B., a post-grad student from Northeastern University. "It's about building a life."
The session, led by young adults with bleeding disorders, covered crucial topics like financial independence, mental health, and self-advocacy in healthcare.
Participants stressed the importance of part-time jobs and budgeting, with one speaker noting, "My campus job taught me
as much about managing my condition as it did about managing my money "
Participants stressed the importance of part-time jobs and budgeting, with one speaker noting, "My campus job taught me as much about managing my condition as it did about managing my money."
Mental health emerged as a key focus "Prioritizing rest and hobbies aren’t selfish it's necessary," emphasized one
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Bleeding Disorders Don't Define Us continued
participant who found solace in crocheting during stressful times.
Perhaps most importantly, these young adults are becoming their own best advocates From scheduling appointments to challenging treatment plans, they're taking charge of their care As one speaker put it, "Don't be afraid to get a second opinion. Your health is worth it."
The session concluded with a powerful message: bleeding disorders may be part of their lives, but they don't define them These teens are stepping into adulthood with confidence, armed with knowledge, and supported by a community that understands their journey.
Teens: Transitioning to Adulthood Friday,September13th,9:00am-10:30am GWCC | B311 - Level 3
Join NBDF on Wednesdays for free, live seminars from experts on bleeding disorders.
Hear the latest research, lifestyle tips, and more in the comfort of your own home.
BE OUR GUEST!
Interested in being a speaker? Contact PR at kclark@bleeding org
Register at bleeding.org/events
In a groundbreaking session at the recent Bleeding Disorders Conference, Dr. Karen Zimowski unveiled the latest advancements in treating inherited bleeding disorders, signaling a new era of personalized care
Gone are the days of one-size-fits-all approaches. Today's treatment landscape is as diverse as the patients it serves. From traditional factor replacement therapies to cutting-edge gene therapy, options abound. "It's not just about stopping bleeds anymore," Dr Zimowski explained "It's about preventing them and improving overall quality of life "
Prophylaxis, or preventative treatment, has emerged as a game-changer, particularly for severe cases. While it requires more frequent infusions, the benefits are clear: fewer bleeds, better joint health, and increased participation in daily activities
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Beyond Band-Aids
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But the real buzz surrounds newer therapies Bispecific antibodies, which mimic the body's clotting process, offer hope for those with inhibitors. And on the horizon? Gene therapy, which could potentially reduce or eliminate the need for regular infusions.
However, Dr. Zimowski emphasized that the key to successful treatment lies in shared decision-making "Patients need to be active participants in their care," she stressed "Understanding your options and communicating your goals is crucial."
As research continues to push boundaries, one thing is clear: for those with bleeding disorders, the future has never looked brighter
Treatment Basics
Friday,September13th,10:45am-11:45am
GWCC | B309 - Level 3
H li th H l Wh S
Parents of children with complex medical needs gathered to share their experiences and strategies for managing stress The session focused on three primary challenges: lack of control, suddenness, and ambiguity.
"It's like trying to catch lightning in a bottle," one mother said, describing her attempts to maintain control in unpredictable situations From unexpected ER visits to navigating school accommodations, these parents face daily challenges that test their resilience.
To combat these stressors, participants emphasized the importance of building a strong support network. As one father put it, "Your team isn't just doctors It's teachers, family, friends anyone who can step in when you need a hand "
Super-Parenting: The Importance of Self-Care and Mental Health for Parents of Children with Bleeding Disorder
Friday,September13th,2:45pm-3:45pm
Education emerged as another crucial tool "Knowledge isn't just power it's peace of mind," a mother shared Understanding treatment options and being prepared for emergencies helps parents feel more in control.
The session also highlighted the importance of self-care. "It's not about eliminating stress it's about managing it," one participant noted Strategies included positive self-talk and planning ahead for potential crises
Perhaps most importantly, these parents emphasized the need for self-advocacy. "We're not just caregivers, we're advocates," a father stated. "Sometimes, you have to be the squeaky wheel to get the best care for your child "
As the session concluded, the message was clear: while parenting a child with complex medical needs is challenging, with the right tools and support, these resilient parents aren't just surviving they're thriving.
VWD: A Glimpse into Tomorrow's Treatments
At the recent Bleeding Disorders Conference, an interactive pre-conference session on von Willebrand Disease (VWD) offered attendees a tantalizing look into the future of treatment and care. The session, sponsored by CSL Behring and led by Lena Volland, brought together experts, patients, and innovators to discuss groundbreaking initiatives and technologies.
Mark Skinner and Elizabeth Clearfield shared insights from the coreVWD initiative, a rigorous effort to identify treatment outcomes most important to patients. "One key takeaway is that both the length and volume of menstrual bleeding are critically important to lived experience experts when considering treatments," Clearfield noted. This patient-centric approach is set to influence future treatment development significantly.
Adding a personal touch, Matt Delaney and Jessica Graham shared their experiences as members of the coreVWD panel, bringing the patient perspective to the forefront of the discussion.
The session took an exciting turn with the introduction of FiveLiters, an innovative company in NBDF's Pathway to Cures portfolio CEO Daniel Powell presented their non-invasive neurostimulation device, which shows promise in addressing unmet needs in the VWD community
"Early clinical trials with type 1 VWD patients experiencing heavy menstrual bleeding have shown a 45% reduction in blood loss," Powell revealed, sharing data from the first five patients using the device This breakthrough could potentially transform the lives of many living with VWD.
As the session wrapped up, attendees left with a sense of hope and excitement for the future of VWD treatment. With patientcentered research driving innovation and cutting-edge technologies on the horizon, the outlook for those living with VWD has never been brighter.
Pre-Con VWD: A Lens into the Future
Friday,September13th,2:40pm-4:50pm
GWCC | B305 - Level 3
#BDC2024 is a great place to meet friends.
Credit: Virginia Hemophilia Foundation
Photo
“Capes and Cotton Candy”
Photo Credit: Brenda Nichole
“Family Fun”
Photo Credit: Rigoberto Garcia
