Global ARCH / Advocacy

Declaration of Rights for Individuals with Childhood-Onset Heart Disease

Video photo credit: Brave Heart Lebanon. 

Organizations that have signed the Declaration of Rights

Action for Disadvantaged People

  • Adult Congenital Heart Association (ACHA)

  • American Heart Organization
Amigos de Corazón

  • Amigos do Coração Goiás
  • Asociación Todo Corazón de Murcia
  • Associazione Italiana dei Cardiopatici Congeniti Bambini e Adulti (AICCA)

  • Associacio de Cardiopaties Congenites (AACIC)

  • Association of Cardiovascular and Thoracic Surgeons of Nigeria
  • Autismnomore
  • Ayuda a Corazon de Niño AC
  • Big Heart to Small Heart
  • Blissorg
  • Brave Heart Fund

  • Brave Heart Fund
  • Brave Little Hearts South Africa

  • Brave Little Hearts Zimbabwe
  • Brave Heart (Lebanon)

  • Brave Heart Namibia
  • Bundesverband Jemah e.V.

  • Canadian Congenital Heart Alliance
  • CHD & RHD Namibia
  • Child Help Uganda
  • Child Watch Foundation
  • Children’s Heart Disease Research Unit, S. Africa
  • Children’s HeartLink

  • Congenital Heart Disease India
  • Congenital Heart Defect Protective Mission
  • Cuore Matto
Dr. KM Cherian Heart Foundation

  • Easterseals Blake Foundation
  • Estrellita de Belen Foundation
  • Ethiopian Society of Cardiac Professionals

  • European Congenital Heart Disease Organisation (ECHDO)

  • Fundacion CorAvant
  • Fundacion Estrellita de Belen Corp.
  • Global Alliance for Rheumatic and Congenital Hearts (Global ARCH)
Global Cardiac Surgery

  • Haiti Cardiac Alliance

  • Healing Little Hearts Global Foundation
  • Heart Care International
  • Heart Kids South Africa
  • Heart of Hope
  • Heart Hope Heroes
Hearts Unite the Globe

  • Hjärtebarnsfonden
  • International American Society of Cardiology
  • International Society for Adult Congenital Heart Disease
International Society for Social Pediatrics and Child Health
International Quality Improvement Collaborative for Congenital Heart Disease (IQIC)

  • Justice for Heart Warriors
  • Kardias
  • Kenya Mended Hearts
  • Let It Echo
  • Little Children
  • Malaysian Congenital Heart Foundation
  • Menudos Corazones
Novick Cardiac Alliance
  • Operación Corazón
Pakistan Children’s Heart Foundation
Program in Global NCDs and Social Change, Harvard Medical School
Rare Care World
  • Reach
  • Rheumatic Heart Disease Support Uganda
  • Rotary Club of Kampala
  • Rowan’s Down Syndrome Awareness Center
Saloni Heart Foundation

  • Stroke Association of Kenya
  • Sudanese Children’s Heart Society

  • Surgeons of Hope
  • T21 Families Support Organization
Team Heart, Inc.
Team Zakki

  • The Mended Hearts, Inc.
  • University of Namibia
  • Vereneniging -encostochondritis patiënten
  • William Novick Global Cardiac Allianc

Global ARCH LIVE webinar presentation

CHD/RHD Needs are Human Rights: What Do we Need? How Do We Get There?

by Global ARCH President Amy Verstappen

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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.