SUPPORT SERVICES
EDUCATIONAL MATERIALS
An important part of CCF's mission is to provide accessible educational materials that are current and easy-to-understand for patients, parents/caregivers and medical practitioners. The goal is empower parents with basic information about pediatric cardiomyopathy and offer practical guidelines on living with the disease.
CCF works with various healthcare organizations and medical societies to develop such materials in print and electronic formats. All materials have been carefully reviewed by CCF’s medical advisors and in most cases are offered free of charge.
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Secrets of the Heart -
Living with Pediatric Cardiomyopathy
CCF has developed a new patient resource entitled Secrets of the Heart - Living with Pediatric Cardiomyopathy. The 38-minute DVD profiles three families with different forms of cardiomyopathy, all of whom have lived successfully through the challenges associated with the disease. Their personal stories are interspersed with factual information on the disease contributed by the physicians that care for them.
DOWNLOAD SUMMARY SHEET & ORDER FORM (PDF)
VIEW MOVIE CLIP (Quicktime)
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Cardio What? - A Kids’ Guide to Cardiomyopathy
CCF and the National Society of Genetic Counselors (NSGC) have partnered to develop this 29-page booklet to help children better understand their own and/or their family member’s diagnosis of cardiomyopathy. Written by genetic counselors with CCF’s input, the booklet uses simple language, colorful illustrations, and fun activities to teach children the basics about the disease.
DOWNLOAD SUMMARY SHEET & ORDER FORM (PDF)
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Understanding Pediatric Cardiomyopathy
This 14-page overview booklet with accompanying inserts on dilated, hypertrophic, and restrictive cardiomyopathy was designed to provide key information to parents, caregivers, and healthcare professionals.
| Save contents as PDF or view in a regular browser window: |
| Pediatric Cardiomyopathy |
PDF | BROWSER |
| Dilated Cardiomyopathy |
PDF | BROWSER |
| Hypertrophic Cardiomyopathy |
PDF | BROWSER |
| Restrictive Cardiomyopathy |
PDF | BROWSER |
DOWNLOAD SUMMARY SHEET & ORDER FORM (PDF)
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Introduction to Pediatric Cardiomyopathies
CCF has partnered with the American Heart Association (AHA) and the National Organization for Rare Disorders (NORD) to bring you the most up-to-date information on the disease. Working in collaboration with the top cardiomyopathy specialists in the U.S., this information was written specifically for the lay public and is complimentary to CCF’s other patient education materials.
VIEW AHA MATERIAL
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VIEW NORD DISEASE REPORT |
Please call (866) 808-CURE or email CCF if you are interested in obtaining printed copies of these materials for distribution.
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