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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.

Shelagh Ross