Programs & Services

CCF Pamphlet

CCF is dedicated to supporting research and education on pediatric cardiomyopathy while enhancing the overall quality of life for those living with cardiomyopathy. A range of programs and services are provided to meet the various needs of the medical and patient communities. For an overview of CCF's key resources and programs, click here.

Research
  • Promote the Pediatric Cardiomyopathy DNA and Tissue Repository as an available research resource to scientists and clinicians.
  • Offer research grants to promising investigators to better understand the disease, improve treatments and ultimately cure it.
  • Assist in patient recruitment for research studies and the dissemination of research findings.
  • Sponsor working groups and research studies in partnership with the Pediatric Cardiomyopathy Registry.
  • Organize medical conferences to provide a venue for researchers and clinicians from around the world to exchange information on the latest findings and determine research priorities.
Patient and Family Support Services
  • Provide relevant and timely information on pediatric cardiomyopathy through CCF's website and biannual newsletter.
  • Publish a variety of print, online and digital materials to help diagnosed children and their families understand and cope with the disease.
  • Maintain an information hotline to assist families with their questions and offer compassion to those who have lost a child to cardiomyopathy.
  • Provide telephone, on-line chat and in-person support groups, regional ambassadors, and an international community forum to help families connect to one another.
  • Offer a financial assistance program for low-income families in need during a child's treatment. Manage a database of individuals with cardiomyopathy as well as a database of physicians in North America who specialize in the disease.
Advocacy and Public Awareness
  • Advocate for increased federal funding of research, awareness and education programs.
  • Work with legislators and federal agencies to promote policies and programs that will improve outcomes and prevent premature death.
  • Provide opportunities and tools for cardiomyopathy families to advocate for their needs.
  • Expand public awareness of pediatric cardiomyopathy through media relations and publicity initiatives.
  • Train volunteers and CCF members to educate their local communities about pediatric cardiomyopathy.
  • Work with relevant coalitions and organizations on legislative initiatives to protect children at risk of sudden cardiac arrest, focusing on public awareness, AED accessibility, AED/CPR training and athletic pre-participation screening.
Patient & Physician Education
  • Disseminate information on the disease to families and medical professionals through CCF's website, newsletters, scientific meetings and other electronic means.
  • Promote the importance of genetic testing and family screening among at-risk and affected family members.
  • Develop patient education materials for national distribution to families, hospitals and schools.
  • Encourage medical centers to establish comprehensive care programs to improve the evaluation and medical management of children with cardiomyopathy.
  • Work with experts in the field to establish standards of care guidelines to ensure consistency in the diagnosis and treatment of pediatric cardiomyopathy.

 

 

 

 

 

 

 

 

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Stay Informed
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The Children's Cardiomyopathy Foundation is a 501 (c)(3) non-profit recognized by the U.S. Internal Revenue Service.
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