BE AN ADVOCATE

CCF Resources
Advocating for Pediatric Cardiomyopathy

Advocacy is an integral part of CCF’s mission. Many policymakers are not familiar with cardiomyopathy because it is a rare disease in children. Increased public education and federal research funding is critical.

CCF recognizes the importance of the patient voice and the need to advocate for public policies that reflect the concerns of those living with cardiomyopathy.

Legislative Priorities

CCF works with key legislators at the federal and state level to raise awareness of pediatric cardiomyopathy and ensure that policies are in place to improve health outcomes for affected children and to prevent premature deaths from sudden cardiac arrest.

CCF’s advocacy work focuses on:

  • Expanding funding for pediatric cardiomyopathy research
  • Promoting awareness of the signs and symptoms of cardiomyopathy
  • Identifying and diagnosing at-risk children with cardiomyopathy
  • Providing better access to specialized medical care

Over the years, CCF has been actively involved in the appropriations process and supporting legislation associated with cardiomyopathy, including the Cardiomyopathy HEARTS Act and the SAFE PLAY Act

CCF also works with the National Heart, Lung, and Blood Institute, Centers for Disease Control and Prevention, and the Department of Defense Congressional Research Program so that pediatric cardiomyopathy receives appropriate funding in research and education.

Ways to Advocate

As a patient, family member, or medical provider, CCF encourages you to become an advocate for pediatric cardiomyopathy. Congressional members want to hear from their constituents on issues that matter to them. There are different ways to contact members of Congress:

  • Send an email or letter
  • Call your legislator
  • Schedule a meeting

Key Messages

The most effective way to advocate is to share your personal story and communicate what action is needed. Your outreach efforts may motivate legislators to reshape their health policy agenda to focus more on pediatric cardiomyopathy. When contacting your legislator, key messages to convey are:

  • Pediatric cardiomyopathy is a serious heart condition with unmet medical needs.
  • It is a chronic and potentially life-threatening disease that can affect any child regardless of age, gender, or race.
  • Cardiomyopathy can be debilitating and is a common cause of heart failure and heart transplantation in children.
  • Cardiomyopathy in children is not well understood in its causes and disease progression.

CCF’s Advocacy Resource Page provides the necessary information and materials to contact your elected leaders.