One in 100 people are born with a congenital heart defect.
Nearly 2.5 million Americans live with CHD today.
Yet CHD remains underfunded, underrepresented, and often overlooked in national conversations about research, innovation, and access to care.
CHD affects people for life.
But our systems are not built around lifelong care. Patients and families often face high costs, limited access to specialists, and uneven support from federal agencies and healthcare programs.
These gaps persist due to three major challenges:
- Underfunding of CHD research and innovation
- Lack of federal attention to the unique needs of CHD patients
- The need for stronger national coordination to advance CHD policy
Our Policy Priorities
Promote insurance coverage and access to care for CHD patients
We advocate for policies that ensure comprehensive, uninterrupted health coverage from infancy to adulthood.
Prioritize federal funding for CHD research
We are advocating for a dedicated, sustained federal investment to accelerate CHD research, innovation, and care.
Advance access to CHD-specific treatments and devices
We’re working to ensure FDA and CMS regulatory pathways prioritize approval and coverage of CHD-specific medical devices, therapies, and interventions.
Ensure equitable access to heart transplants for CHD patients
We’re modernizing transplant eligibility criteria, improving access to specialized transplant centers, and advocating for policies that recognize the unique medical complexities of CHD patients.
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