Every 100th Heart Forms to Elevate Congenital Heart Disease on the Federal Policy Agenda

WASHINGTON, Feb. 3, 2026 /PRNewswire/ -- Today, leaders across the congenital heart disease (CHD) community announced the launch of Every 100th Heart (EHH), a national coalition dedicated to uniting patients, families and clinicians to elevate CHD as a federal health policy priority.

Congenital heart disease is the most common birth defect in the United States, affecting nearly one in 100 babies and millions of children and adults nationwide. Yet for far too long, the CHD community has felt it is underrepresented and underfunded in federal policymaking. CHD drives more than $6 billion in annual hospital costs, and pediatric heart conditions account for an estimated 15% of all pediatric hospital charges nationally — despite CHD patients representing just 1% of the population.

Every 100th Heart intends to take its message to policymakers and change that trajectory by advancing a coordinated national policy agenda; raising awareness among policymakers and the public; and proposing policy solutions to improve survival, outcomes and quality of life for people living with CHD.

Every 100th Heart's founding organizations include Additional Ventures, the Adult Congenital Heart Association (ACHA), the American Heart Association, the Children's Heart Foundation, Conquering CHD and the Mussallem CHD Alliance. Collectively, these organizations bring decades of experience advancing care, research and advocacy for the congenital heart disease community, including advocating for the passage of the Congenital Heart Futures Reauthorization Act in 2024. Building on that foundation, Every 100th Heart creates a shared platform for collaboration — one designed to bring more voices into a united strategy. 

"For nearly two decades, the Adult Congenital Heart Association has been proud to be a leader in advancing critical legislation for federal funding of research for people born with heart defects," said Mark Roeder, President and CEO of ACHA. "Through the Every 100th Heart coalition, we look forward to expanding our advocacy into other policy issues affecting the congenital heart disease community, such as addressing insurance barriers and advancing access to CHD treatments and devices."

"The launch of Every 100th Heart marks a pivotal step in elevating our efforts to bring national attention to congenital heart disease," said Emily Holubowich, National Senior Vice President, Federal Advocacy at American Heart Association. "For too many families, CHD is a lifelong journey marked by financial uncertainty, gaps in coverage and care and need for additional federal research investment for lifesaving and life-changing discoveries. The American Heart Association is proud to stand with this dynamic group of organizations to chart a future where CHD is not overlooked but prioritized in every aspect of federal policymaking." 

"Transforming congenital heart defect care requires a bold commitment to fostering innovation across research, clinical care and policy, and supporting change in our health care system is essential to realizing this vision," said Orin Herskowitz, President of the Mussallem CHD Alliance. "We plan to work with the Every 100th Heart coalition to demonstrate that CHD is an actionable area for federal and state policymakers to align incentives and resources, ensuring that congenital heart patients receive the highest quality care and access to the innovative and cost-saving technologies they deserve."

The coalition will convene patients, families and clinicians for a National CHD Advocacy Summit in Washington, D.C., on May 19-20, with the goal of bringing together CHD advocates for training, networking and policymaker education and engagement.

For more information, visit www.every100thheart.org or follow @Every100thHeart on Instagram and LinkedIn.

Media Contact:
Stephanie Wight
[email protected]

SOURCE Every 100th Heart