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Teaming up to bring awareness about congenital heart disease

CHD Awareness Day recap

Every February 7-14 patient and family advocates around the world participate in Congenital Heart Disease (CHD) Awareness Week. It is a time to raise awareness of CHD in their local communities. Global ARCH and Children’s HeartLink are two leading childhood-onset heart disease advocacy organizations that work to improve lifelong outcomes worldwide.

What is CHD? 
CHD is the most common birth defect in the world. Currently more than 1.35 million children are born with CHD worldwide each year. It is a top cause of infant death globally. CHD occurs in 1 in 100 births, and 1 in 4 children with CHD need infant surgery to survive. Despite its prevalence, only 1 in 10 children born with CHD has access to high-quality care. CHD is a chronic disease that requires lifelong care. 

Our new Advocacy Toolkit

This year in celebration of CHD Awareness Week, Children’s HeartLink and Global ARCH teamed up to launch their new Advocacy Toolkit. It is designed to help individuals and organizations advocate to improve the health and well-being of congenital and rheumatic heart disease (RHD) patients. It offers information and practical tools on how to carry out advocacy efforts in local communities around the world. It is full of resources to plan, perform, and measure advocacy activities. Visit our Advocacy page and download the Toolkit.

Your voice counts!

As CHD awareness week comes to a close, it’s important to remember that advocating for CHD and RHD patients’ access to lifelong quality care is a critical year-round activity. To get involved, if you haven’t already, please join Global ARCH to be a part of our global network of advocates. Also, please take a moment to sign the Declaration of Rights for Individuals with Childhood-Onset Heart Disease. We will use the Declaration as a tool to raise awareness about the inequities in care and support for people living with CHD and RHD, and to encourage policy makers to make much-needed changes.

Global ARCH

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.