A comprehensive guide to organizations, support networks, and educational materials for the congenital heart defect community
Navigating life with a congenital heart defect can feel overwhelming, but you don't have to do it alone. We've compiled this resource directory to connect you with organizations that understand the CHD journey—from diagnosis through adulthood. Whether you're a patient seeking peer support, a parent looking for guidance, or a caregiver wanting to learn more, these resources are here to help.
The leading nonprofit organization dedicated to serving adults with congenital heart disease. ACHA provides education, advocacy, and community support specifically tailored to the unique needs of grown-up CHD patients. Their programs include the Heart to Heart peer mentor program, ACHA Ambassadors advocacy network, and resources for finding accredited ACHD care centers.
Visit WebsiteDedicated to funding the most promising research to advance the diagnosis, treatment, and prevention of congenital heart defects. Since 1996, The Children's Heart Foundation has funded over $15 million in CHD research, supporting studies that have led to breakthroughs in surgical techniques, medical therapies, and quality of life improvements.
Visit WebsiteA program of Mended Hearts, this organization focuses on supporting families affected by CHD from prenatal diagnosis through adulthood. With over 100 chapters across the United States, Mended Little Hearts provides hospital visits, family support groups, and educational resources.
Visit WebsiteOne of the largest CHD advocacy organizations in the country, Conquering CHD focuses on awareness, education, and community building. They organize the annual Congenital Heart Walk events in cities nationwide, bringing together thousands of heart families to celebrate survivors and remember those lost.
Visit WebsiteA nonprofit organization founded by mothers of children with Hypoplastic Left Heart Syndrome (HLHS). Sisters by Heart provides care packages to newly diagnosed families, educational resources about single ventricle heart defects, and a supportive community of families navigating similar journeys.
Visit WebsiteProvides comprehensive educational resources including their flagship publication, "It's My Heart," a detailed guide to understanding congenital heart defects. This organization helps families understand complex cardiac diagnoses, treatment options, and what to expect throughout the CHD journey.
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