Building a national
movement to make
CHD a priority
Join our coalition for the CHD Advocacy Summit in Washington, D.C. May 19-20
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What we do
Uniting the CHD community to advance care, innovation, and support for the 1 in 100 born with congenital heart disease.
EDUCATE
Educate decision makers about the impact and prevalence of the leading cause of the birth defect mortality
ADVOCATE
Advocate for strengthening CHD research, innovation, and smart policies
UNITE
Build a united CHD community for patient, providers, researchers and advocates
What we do
Uniting the CHD community to advance care, innovation, and support for the 1 in 100 born with congenital heart disease.
- EDUCATE
Educate decision makers about the impact and prevalence of the leading cause of the birth defect mortality
- ADVOCATE
Advocate for strengthening CHD research, innovation, and smart policies
- UNITE
Build a united CHD community for patient, providers, researchers and advocates
CHD at a glance
Congenital heart disease (CHD) is the most common birth defect and a lifelong condition affecting people of all ages.
- 1 in 100 births
Each year in the U.S., nearly 40,000 babies are born with CHD. (CDC, 2025)
- 2.5 million Americans living with CHD
Improvements in care are helping children and adults with CHD live longer, which is driving growing needs for patients of all ages. (CDC, 2025)
- CHD is lifelong - not cured
Survival has improved, but CHD requires ongoing, specialized care for life. (CDC, 2025)
- CHD research remains underfunded
Despite its prevalence and impact, CHD receives disproportionately low research investment. In 2023, the National Heart, Lung, and Blood Institute (NHLBI) allocated only about 3% of its $3.9 billion budget to CHD research. (NIH REPORTER)
- Families face high financial burdens
CHD costs the U.S. nearly $10 billion a year in hospital care, while families of children with complex CHD shoulder about $190,000 out-of-pocket in the first five years of life.
(NIH, 2023, Cardiol Young, 2025)
"Establishing a national coalition focused on the needs of people with CHD helps prioritize access to life-improving treatments and unites advocates around a shared goal: realizing their full potential."
Kelsey L.
Mother to a son with CHD, New Mexico
"For too long, families like ours have borne the burden of CHD alone. It’s time for federal policy and investment in research to change the trajectory of care and outcomes for these patients and their families.”
Diane P.
Mother to an adult son with CHD, Massachusetts
"Advocacy helps turn the CHD journey into something less isolating by building understanding, awareness, and connection. A national coalition would amplify that impact by bringing people together and driving change on a national level."
Brook A.
Adult CHD patient, Kentucky
"Becoming a heart mom showed me that this journey doesn’t fit neatly inside a hospital stay. Every 100th Heart exists to ensure care, research, and advocacy reflect what families actually live with long-term."
Sarah B.
Mother to a daughter with CHD, Kentucky