Global ARCH Annual Report 2023

Message from the President & Executive Director Dear friends, As we reflect on this past year, one moment that stands out in our minds was during the World Congress for Pediatric Cardiology & Cardiac Surgery when we gathered over 37 leaders from 23 countries to share our common experiences and challenges. This moment, among many, was inspirational and truly defined what Global ARCH is – a global community seeking to improve the lives of those impacted by congenital heart disease (CHD) and rheumatic heart disease (RHD) around the world.

We have been able to achieve so much this year thanks to a generous donation made by Noemi de Stoutz upon her passing. Noemi was a trailblazer and dedicated champion for life-long care for RHD and CHD. Her generosity has ensured that our community can continue our fight for the right of every person affected by childhood-onset health disease to achieve their right to health no matter where they were born. Noemi's donation has allowed us, among other things, to finance our members' attendance at the World Congress in Washington, DC and various advocacy events, run leadership training sessions, create educational resources, and speak about our work and the need for lifelong care at important global meetings and events.

Throughout the year we continued to build our collective voice at notable events such as the World Congress and the United Nations General Assembly. The patient and family voices were inspirational to help catalyze change. Moments like this remind us of the importance of our mission to ensure that patient and family voices are being included in a meaningful way.

We reflect on 2023 with both gratitude and admiration for our growing global community.

While we are proud of our success throughout this year, we cannot stop as there is still work to be done. All of this cannot be achieved without the support from our heart community - we are much stronger together.

We will continue this work until every person impacted by CHD and RHD receives support and care because no one deserves to fight this battle alone.

Amy Verstappen, President

Kate Doherty-Schmeck, Executive Director

What is Global ARCH Global ARCH is an alliance of congenital (CHD) and rheumatic heart (RHD) patient and family organizations and stakeholders from around the world.

Our Mission Our mission is to improve worldwide life-long outcomes in childhood-onset heart disease. We do this by empowering patient and family organizations from around the world to learn, collaborate, and speak out together about the unmet needs of those living with childhood-onset heart conditions.

What We Do We connect and strengthen CHD and RHD organizations globally through peer mentorship, leadership development, educational resources, and regional and global conferences.

We speak out for the rights of CHD and RHD patients through our Rights Campaign and by promoting and supporting patient and family-led advocacy.

We educate patients, professionals, and humanitarian organizations on the global needs of CHD and RHD patients and the issues that matter most to our communities.

We collaborate with professional and humanitarian organizations to advocate for better services for every person affected by childhood-onset heart disease.

Global ARCH by the Numbers

ADENAC Action for Disadvantaged People Adult Congenital Heart Association Adultos con cardiopat­ías congénitas de Argentina AICCA Onlus Amigos do Coração Goiás Amigos de Corazón Ayuda A Corazon De Niño Ac Bebé Cardio Big Heart to Small Heart Brave Heart Brave Little Hearts Namibia Brave Little Hearts South Africa Brave Little Hearts Zimbabwe Camp Odayin Canadian Congenital Heart Alliance Child Heart Care Project under National Institute for Woman and Child Development Children’s Heart Association Children’s HeartLink CHD Malaysia Children’s Heart Federation Círculo do Coração Congenital Heart Disease India Connecting Hearts to End Heartbreak (CHEER Hearts) Conquering CHD Cuore Matto Cure Kids Fiji Dar Elteb Eltakhassosi Charity Hospital European Congenital Heart Disease Organization Faayo Community Heart Health Initiative Finnish Association for Heart Children and Adults Fundación Corazones Luchadores Chile Fundación Corazoncitos Fundación El Cielo Para los Niños de Ecuador Fundacion Estrellita de Belen Corp Fundacion Live Longer Mexico Fundación María / Hospital María Fundación Menudos Corazones Global Cardiac Surgery Heart and Stroke Foundation Heart Kids Ltd. Heart Kids New Zealand Heart Kids South Africa Heart & Stroke Heart Warriors of the Philippines Inc.

Hearts Unite the Globe Herznetz.Ch Hjärtebarnsfonden Hole in the Heart International Hospital International Society for Adult Congenital Heart Disease Jemah Ev JK HOPE & HEALTH FOUNDATION Justice For Heart Warriors Kardias AC Kawasaki Disease Canada Kehilat HaLev (The Heart Community) Kenya Mended Hearts Patient Association Let it Echo Little Heart Community Los Cabos Children’s Foundation Mending Kids Mending Tiny Hearts Namibia Hearts Namibia Rheumatic and Congenital Hearts National Institute of Cardiovascular Disease Karachi Pakistan Neistinn, Children's Heart Foundation in Iceland Ollie Hinkle Heart Foundation Operación Corazón Pakistan Children’s Heart Foundation Pan African Network of Pediatric and Congenital Hearts Panhellenic Congenital Heart Disease Association Patiëntenvereniging Aangeboren Hartafwijkingen (PAH) RHD Support Group, Uganda Heart Institute Rheumatic Heart Disease Philippines Saloni Heart Foundation Sisters by Heart Siut Somerville Heart Foundation Sri Sathya Sai Sanjervani Hospitals Nawa Raipur Surgeons of Hope Tanzania Rheumatic Heart Disease (R.H.D) Registry Team Heart Inc. The Children’s Cardiac Foundation of Africa The Heart Chamber The Mended Hearts, Inc. University of Jordan Hospital The Children’s Cardiac Foundation of Africa Voice of a Heart/Ijwi ry'Umutima William Novick Global Cardiac Alliance Zipper Sisters

*Red font denotes new member

Recent growth

91 member organizations from 45 countries (half from LMICs)

Empowering Our Members Resources We updated our Advocacy Toolkit so it is even more accessible for our members. The Toolkit provides key facts and messaging, real-life examples, ways to build partnerships and understand who the decision-makers are and how to target them, how to make an advocacy plan, and measuring success. It also has resources and sample letters.

Talking about CHD and Mental Health – an interview with Psychologist Adrienne Kovacs This interview covers several important topics, such as developing resiliency in patients, factors that can contribute to mental health issues, finding mental health support, and self-care strategies – all in an easy-to-read format.

The Heart Dialogues - Taking the stress out of cardiology visits Leigh Kamping-Carder, founder of the online blog The Heart Dialogues, has written a Guide to more effective, less stressful cardiology visits, and has kindly shared it with us.

WhatsApp Another popular resource that is widely used among our members is WhatApp, where members can post activities, ask questions, and share resources. It’s an active message board open to all Global ARCH members. If you're a leader who would like to be added to our WhatApp group please send us a message to info@global-arch.org.

Leaders' Forum Once again this year we met monthly to discuss a wide range of topics, from fundraising, the Call to Action and how to sign on, CHD Awareness Day activities, and more. Our meetings are always lively and many members say they look forward to it all month!

Sharing Our Perspective Webinars Lifelong care needs of simple CHD lThis webinar looked at simple CHD and the life-long care needs and prospects, featuring noted speakers from the United States, India, and Pakistan.

Improving global inequities in pediatric and congenital heart care Highlighting the global burden of disease for CHD and RHD, and the challenge of accessing treatment in low- and middle-income countries, this webinar also introduced the Call to Action campaign.

Panelists represented Pakistan Children’s Heart Foundation; Real Hospital Portugues in Brazil, and the Indian Department of Health and Family Welfare in Kerla, India.

The Stigmatized Heart and its Impact on Mental & Physical Health We discussed the impact of stigma on patients living with childhood-onset heart disease. Our expert panelists discussed their personal experiences with stigma and that of their peers, and shared insight into why it happens and what can be done about it.

Event Highlights Global ARCH visits Amrita Hospital Global ARCH was invited to participate in a 2-day ACHD symposium "Growing Up with Congenital Heart Disease", hosted by Amrita Hospital in Kerala, India. Global ARCH president, Amy Verstappen, was invited by India's Dr. Krishna Kumar to speak about the importance of lifelong care for people with CHD. Appu K. George, representing Congenital Heart Defects Protective Mission (CHDPM) in India, spoke about his personal journey overcoming the challenges of living with a complex heart defect. Global ARCH executive team member Grace Jerald, and founder of CHD Malaysia, served as an important link in helping to develop the Asian Network as the Asian regional representative.

American College of Cardiology Conference in USA Belen Blanton Altuve, founder of Fundacion Estrellita de Belen, and Amy Verstappen, attended the American College of Cardiology Conference held in New Orleans, LA. This was Belen's first travel adventure representing Global ARCH. Board member Farhan Ahmad also attended the American College of Cardiology Conference via Zoom, and spoke about the burden of CHD in Pakistan, and the role of the Pakistan Children's Heart Foundation (PCHF).

Event Highlights, cont.

The International Conference on Birth Defects and Disabilities in the Developing World, held in Santiago, Chile, featured a panel on CHD moderated

by Global ARCH board member Bistra Zheleva.

Cecilia Ramirez, leader of Chile’s Fundacion Corazones Luchadores, spoke about patient and family advocacy, and Medical Advisory board member Dr. Babar Hasan from Pakistan, and others, addressed the major impact that CHD on childhood survival and life-long wellbeing.

World Congress on Pediatric Cardiology & Cardiac Surgery, Washington, DC The largest event of the year took place at the end of August when 37 Global ARCH member organizations from 23 countries met in Washington, DC at the 8th World Congress for Pediatric Cardiology & Cardiac Surgery. On Sunday, we held our Global Summit, using break-out sessions to learn more about each group, and to discuss the challenges we all face.

Each Global ARCH attendee received a free registration to attend the Congress and all of its sessions, and was invited to submit a poster of their organization for display in the exhibition area. The Global Village, a new concept for this more globally-themed Congress, provided a table for each group to display information about their organization.

I learned that advocacy cannot be done alone: we need to work as a team to share experiences and improve the care of patients and their families.

The Global ARCH summit on Sunday was absolutely great. The workshops, talks, and getting to know everyone really set the tone and gave us the tools to get the most of the conference as a whole.

Advocating For Change Call to Action The Call to Action on Addressing the Global Burden of Pediatric & Congenital Heart Diseases was officially launched during the World Congress opening ceremony. The Call to Action is an urgent call for action by all governments, all health and development agencies, and the world research and academic community to protect and promote the health of all people with pediatric and congenital heart diseases.

Global ARCH visits USAID & the World Bank Representatives from Global ARCH, Children's HeartLink, and the 8th World Congress for Pediatric Cardiology & Cardiac Surgery, met with the maternal and child health and nutrition team at the United States Agency for International Development (USAID) in Washington, DC. They also met with the Global Service Delivery team at the World Bank to discuss the role of CHD in maternal and newborn outcomes in low- and middle-income countries, and to introduce the Call to Action.

Global ARCH at #UNGA2023 Global ARCH joined Operation Smile, Miracle Feet, and Children’s HeartLink at the UN General Assembly meeting in September to speak up for the needs of children born with birth defects around the globe in need of surgical correction or other treatment, and how to advocate with policymakers for their inclusion in the universal health coverage agenda. This meeting was sponsored by the Permanent Mission of Malaysia to the United Nations and the Malaysia Ministry of Health.

World Congress on Rheumatic Heart Disease The World Congress, hosted by the World Heart Federation in partnership with other leading organizations in the field, brought together global experts on rheumatic heart disease (RHD), including Global ARCH board members Flavia Baturine Kamalembo, Uganda Heart Institute and Anu Gomanju, NCDI Poverty Network, to discover the latest research, engage with global leaders, and explore practical and effective solutions to ending rheumatic heart disease once and for all.

Research Many Global ARCH members have contributed to journal articles this year. Here are just a few highlights.

Advocacy at the Eighth World Congress of Pediatric Cardiology and Cardiac Surgery. Cardiol Young. 2023 Aug;33(8):1277-1287. doi: 10.1017/S1047951123002688 Enhancing quality of congenital heart disease care within resource-limited settings. Pediatr Cardiol. 2023 Dec 20. doi: 10.1007/s00246-023-03351-2.

Recommendations for developing effective and safe paediatric and congenital heart disease services in low-income and middle-income countries: a public health framework. BMJ Glob Health. 2023 May;8(5):e012049.doi: 10.1136/bmjgh-2023-012049.

The Role of Congenital Heart Disease Patient Organizations in Advocacy, Resources, and Support Across the Lifespan. CJC Pediatr Congenit Heart Dis. 2023 Sep 12;2(6Part A):256-266.

Global Access to Comprehensive Care for Pediatric and Congenital Heart Disease. CJC Pediatr Congenit Heart Dis. 2023 Oct 10;2(6Part B):453-463.doi: 10.1016/j.cjcpc.2023.10.001.

Over the past 20 years, CHD patient organizations have evolved from small support groups in paediatric cardiac wards to influential providers of education, support, resources, and advocacy for their communities. There has been a huge shift in patient knowledge and empowerment thanks in large part to patient organizations worldwide, making the patient experience less isolating and one of community, learning, and knowledge.

Building Our Sustainability Thanks to a very generous donation in 2022, we have been able to significantly expand our impact and resources. The “Coherence Fund”, bequeathed by Noemi de Stoutz, Global ARCH founding member and dedicated member of our Board of Directors, will be used to promote a coherent, lifelong care approach, according to her wishes. Noemi not only lived with complex congenital heart disease, but she was a passionate advocate as well as a well-respected oncologist in Switzerland.

Our first step has been to expand from an all-volunteer organization to one led by Kate DohertySchmeck, our first full-time executive director, who began her new role in October 2023.

The Fund has been initially used to sponsor 37 of our member organization leaders from 23 countries to attend the 8th World Congress of Pediatric Cardiology & Cardiac Surgery in Washington DC. Considerable work is planned to update our Strategic Plan to reflect our growing member base and the increased possibilities of what we can achieve with this latest funding. We are embracing our expansion possibilities, and look forward to setting goals so that we can achieve our mission and vision.

Board of Directors

Medical Advisory Board

Amy Verstappen - President Disty Pearson - Vice-President Shelagh Ross - Secretary David La Fontaine - Treasurer Flavia Kamalembo Baturine Grace Jerald Mehwish Mukhtar Lavinia Ndemutila Ndinangoye Ruth Ngwaro Bistra Zheleva

Kathy Jenkins, MD, MPH Disty Pearson – Board Liaison and Vice-Chair Sandra da Silva Mattos, MD, PhD Jack Colman, MD, FRCPC Babar S. Hasan, MD Christopher Hugo Hamman, MD R Krishna Kumar, MD Matt Oster, MD, MPH Alexis Palacios-Macedo, MD Fenny Fiindje Shidhika, MD Sivakumar Sivalingam, MD Dominique Vervoort, MD, MPH, MBA Liesl Zühlke, MBChB, DCH, FCPaeds, Cert Card, MPH, FESC, FACC, PhD

Emeritus Board Member: Vikas Desai

Our Financial Health as of December 31, 2023 All in USD Assets $107,371 Cash $97,121 Accounts receivable $10,250

Revenue Grants $155,500 Contributions $6,621 Program Support $15,250

Liabilities $16,762 Net Assets. $90,609 Program Administrative

Total Liabilities & Net Assets $107,371

Total Revenue $177,371 Total Administrative $9,914 Total Program $143,375 Total Expenditures $154,900 Net Assets $90,609

Our Donors Global ARCH extends a heartfelt thank you to all of our donors in 2023.

Together, we are helping change the lives of CHD and RHD patients worldwide.

Barbara Aldworth Lynn Fatka Belen Altuve Marsha Friedman Maryellen Barker Hays Friends of Kardias Maria Barracca Pamela Gray Amy Basken Green Street Monthly Meeting Children’s HeartLink Rachel Grencavich Amy L. Cohen Joshua Gutoff Elizabeth Coyne Patti Harbman Susan Deland Grace Jerald The Deren Family Eve Jochnowitz Debbie Doherty Jennifer Kaczor Jessie Doherty Marlene Lachcik Joseph & Jennifer Doherty The Lisa Family The Doherty-Schmeck Family Eileen Monreale Nina Engel Kate Mooradian Hilary Enyedy Disty Pearson Donna Everitt

Michelle Perron Karen Psolka Shelagh Ross Scott Salvaggio Margaret Schafer Kate Schmeck Jennifer Scott Barbara SolomonSperegen Margaret Sovek Patsy Taylor Amy Verstappen Suzanne Werner Bistra Zheleva

www.global-arch.org info@global-arch.org