Childhood-onset heart disease is one of the world’s hidden health crises. It leads to preventable deaths, disabilities, and lifelong challenges for countless babies, children, adults, and families. At Global ARCH, we are committed to changing this narrative. Together, we are working to ensure that everyone impacted by childhood-onset heart disease—no matter where they live—has access to the care, support, and opportunities they need to thrive.
Through Invisible Hearts, Collective Action, we are turning vision into action. By equipping patient and family organizations with the knowledge, tools, connections, and resources they need to advocate and lead, and by aligning our efforts with key Sustainable Development Goals (SDGs), we are building a global movement for lasting change. This initiative invites healthcare providers, policymakers, funders, and other stakeholders to join us in creating a world where every person impacted by childhood-onset heart disease lives a life unlimited by their condition.
Our Current Impact
Lives Reached
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Patient and Family-Led Organizations
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Countries
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Our dashboard will be launching soon, offering a closer look at the collective impact we’re making together. Stay tuned for updates!
How We Plan to Achieve Our Vision
Expand Global Reach and Access
Collectively support 500,000 lives annually through 150 patient- and family-led organizations across 75 countries and equipping them with resources, services, and support.
Mobilize Advocacy & Drive Policy Change
Empower 500 advocates to drive meaningful change, initiate 50 awareness campaigns, and engage policy-makers to elevate childhood-onset heart disease on the global health agenda.
Foster Meaningful Partnerships for Impact
Forge 30 meaningful partnerships with key organizations to amplify impact through shared goals and policy improvements.
Empower and Train Local Leaders
Deliver 50 training sessions to build a strong network of skilled leaders, fostering collaboration among patients, families, clinicians, industry leaders, donors, and other stakeholders to drive sustainable change.
Heart Voices: Stories That Unite Us
Through the stories of patients, families, and the medical community, we bring to light the challenges and triumphs of childhood-onset heart disease. These voices amplify resilience, fostering collective action that drives change and inspires us all in our mission.
NahimehJaffar has worked as a certified Project Manager (PMP) in various fields, including Public Health, Biotech, and Pharmaceuticals, working within clinical settings such as hospitals and clinics. In addition, she worked with global communities in Africa, the Caribbean, and the Middle East, supporting various social impact projects. Ms.Jaffarhas been involved in preventive health initiatives in collaboration with the Center for Disease Control (CDC, USA) and the Center for Medicare and Medicaid Services (CMS, USA).
Ms.Jaffarholds an MBA in Business Development from the Swiss Institute of Higher Management, Vevey, Switzerland, and a bachelor’s degree in Consumer Affairs from California State University, Northridge, USA.
Amy Verstappen, President
Amy Verstappen has been a patient advocate and health educator since 1996, when her own challenges living with a complex heart defect led her to the Adult Congenital Heart Association, where she served as president from 2001 to 2013. She has served as an advisor to the Centers for Disease Control the National Heart, Lung and Blood Institute; and the International Society for Adult Congenital Cardiac Disease, and worked with congenital heart patient and professional groups throughout the USA and the world. Ms. Verstappen received a Masters in Education in 1990 and a Masters in Global Health in 2019.