info@global-arch.org

Abous Us

Our Mission

The mission of the Global Alliance for Rheumatic and Congenital Hearts (Global ARCH) is to improve worldwide life-long outcomes in childhood-onset heart disease through empowering patient and family organizations.  Membership is free and open to any group that serves congenital and/or rheumatic heart patients and their families.   Our alliance brings together organizations from around the world to learn, collaborate, and speak out together about the unmet needs of those living with childhood-onset heart conditions.

Our Vision

Every person affected by childhood-onset heart problems receives the life-long care they need to live life unlimited by their disease.

What We Do


We connect and strengthen global congenital heart disease and rheumatic heart disease organizations through peer mentorship, leadership development, educational resources, and regional and global conferences.  

We speak out for the rights of congenital heart disease and rheumatic heart disease patients through our Rights Campaign and by promoting and supporting patient and family-led advocacy

We educate patients and their families, professionals, and humanitarian organizations on the global needs of congenital heart disease and rheumatic heart disease 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.

Quick Facts

  • Each year about 1.3 million children are born with congenital heart disease (CHD).[1]
  • One in four will die without immediate intervention[2] and many more will need childhood surgery to reach age 18. But 90% of the world’s children have no access to cardiac care.[3]
  • In many disadvantaged communities, untreated infections also can cause rheumatic heart disease (RHD).[3]
  • RHD is the most common children’s heart problem in many low-income countries. Worldwide there are an estimated 33 million people living with RHD.[4]
  • Both CHD and RHD patients need life-long special cardiac care to keep their hearts healthy. Even countries with excellent childhood heart care often struggle to care for these patients as they age.
  • We need your help to ensure that every person with childhood-onset heart disease gets the care they need to live a long and healthy life

References

  1. van der Linde, D., Konings, E. E., Slager, M. A., Witsenburg, M., Helbing, W. A., Takkenberg, J. J., & Roos-Hesselink, J. W. (2011). Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis. Journal of the American College of Cardiology, 58(21), 2241-2247.
  2. Moller JH, Taubert KA, Allen HD, Clark EB, Lauer RM. Cardiovascular health and disease in children: current status. A Special Writing Group from the Task Force on Children and Youth, American Heart Association. Circulation 1994;89(2):923-930.
  3. Carapetis JR, Steer AC, Mulholland EK, Weber M. The global burden of group A streptococcal diseases. Lancet Infect Dis 2005;5:685-694.
  4. Watkins DA, Johnson CO, Colquhoun, SM, Karthikeyan G, Beaton A, Bukhman G, et al. Global, regional, and national burden of rheumatic heart disease, 1990-2015. N Engl J Med 2017; 377:713-722.

Our History

The Global Alliance for Rheumatic and Congenital Hearts (Global ARCH) began with a visionary group of congenital heart disease and rheumatic heart disease leaders, each directly affected by childhood-onset heart disease. They shared a vision of transforming global congenital heart disease and rheumatic heart disease patient outcomes through empowering patient and family-led organizations.

In the summer of 2017, they convened the first International Congenital Heart Leadership Summit (ICHLS), which brought together 30 congenital heart disease and rheumatic heart disease leaders representing 21 countries on six continents. In order to create a stronger voice on behalf of congenital heart disease and rheumatic heart disease patients and families, the participants agreed unanimously to form a new, independent non-profit organization called the Global Alliance for Rheumatic and Congenital Hearts (Global ARCH). The collective vision for Global ARCH is to improve and prolong the life of every heart child and adult – no matter where they were born.

Leadership

Board of Directors

Medical Advisory Board

Staff

Annual Report

2021

2020

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Nahimeh Jaffar 

Nahimeh Jaffar 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. Jaffar has 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. Jaffar holds 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.