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Research

There is little understanding of how to prevent heart defects and unfortunately, no cure either. Thanks to medical advances, patients with congenital heart defects are living longer, but there is still much work to be done. It is part of our mission to continually support the research necessary to find the best treatments and work towards a cure for CHD. There are over 2 million people, in the U.S., living with congenital heart defects. However, research studies are often designed by the scientists themselves. PCHA actively promotes the idea that the patient should be at the center of any research study from beginning to end. We represent the patient voice in research collaboratives and individual research projects.

Legislation

The Federal Government is the largest funder of CHD research. PCHA advocates fought for the passage of the CHFRA, which became law in December of 2018. This legislation authorizes $50 million for CHD research and data collection through the Centers for Disease Control and Prevention (CDC).