Advocacy is an integral part of CCF’s mission. We recognize that in order to improve health outcomes and reduce preventable deaths, we need broader public initiatives that will increase research, education, and access to specialized care. CCF works with key legislators to ensure that the concerns and needs of children with cardiomyopathy and their families are heard at the federal, state, and community level.

Importance of Advocacy

Advocacy plays an important role in ensuring that federal spending is appropriate for pediatric cardiomyopathy and that public policies reflect the needs of those living with cardiomyopathy.

Members of Congress are most responsive to people from their own states and communities. Their job, as an elected official, is to respond to their constituents’ concerns.

Cardiomyopathy is a rare disease and many policymakers have little to no knowledge of the disease. Policymakers start to understand the seriousness of the condition once they hear from people affected by cardiomyopathy. As more people speak out, policymakers are more prone to take action.

Legislative Priorities

CCF advocacy efforts are focused on:

  • Increasing funding for pediatric cardiomyopathy research and education
  • Promoting awareness of cardiomyopathy and sudden cardiac arrest
  • Identifying and diagnosing at-risk children with cardiomyopathy
  • Improving health outcomes and preventing premature death
  • Providing better access to specialized medical care

In order to be heard by members of Congress, we need to join forces with other advocates across the country focused on the same issues. A collective voice is what will attract the attention of legislators and motive them to change public policy. Therefore, it is critical that patients, families, friends, relatives, and health care providers weigh in with their members of Congress. Learn more

Take Action

Whether you are a parent, family member, friend or person living with cardiomyopathy, you can take on the role of a CCF advocate and ask Congress to take action on cardiomyopathy-related legislation. Your personal story takes on an added importance when other families are also advocating for the same bill or issue. Learn more

Advocacy Training & Tools

Advocacy on healthcare policy does not require special skills; it just involves telling your story with passion and focus. CCF has the resources and tools to help you effectively reach out to your elected officials with a clear message. Learn more

Stay in Touch

If you have contacted a member of Congress on a cardiomyopathy related issue, please tell us about it. Fill out an Advocacy Contact Form, and we can assist with follow up.