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 sees the value in uniting advocates across the country to focus on common issues that affect the patient and medical community. CCF’s advocacy work focuses on:

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

A collective voice is what will capture the attention of legislators and motive them to change public policy. Patients, family members, and medical providers can make a difference by reaching out to their members of Congress on cardiomyopathy-related issues. 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 issues or bills that matter to you. There are different ways to contact your elected officials to communicate your views. Learn more

Advocacy Training & Tools

The most effective way to advocate is to share your personal story and follow up with a specific request. CCF has the resources and tools to help you effectively reach out to your elected officials with a clear message. If you have contacted a member of Congress, please tell us about it so we can assist with follow up. Learn more