Children's Cardiomyopathy Foundation
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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.

To place an order for any of the below items, please DOWNLOAD ORDER FORM (pdf) and fax to CCF at 201-227-7016. For international orders of more than 5 pieces, there is a shipping and handling charge.

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 a PDF document.
Pediatric Cardiomyopathy PDF
Dilated Cardiomyopathy PDF
Hypertrophic Cardiomyopathy PDF
Restrictive Cardiomyopathy PDF
Left Ventricular Non-Compaction Cardiomyopathy PDF



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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.

VIEW MOVIE CLIP    VIEW DVD



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Ensuring a Good Learning Environment –
A Cardiomyopathy School Resource Kit

This resource kit is intended to educate school staff about the disease and guide parents in working with their child's school to obtain the appropriate accommodations and modifications. The kit includes two guidebooks, a sample school letter and templates for a healthcare plan, 504 education plan and emergency care plan.

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Guide for School Personnel PDF
Guide for Parents PDF
Sample School Plans and Letters PDF



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.

VIEW GUIDEBOOK (PDF)



Pediatric Heart Transplants: A Guide for Patients and Families
CCF has partnered with the Pediatric Heart Transplant Foundation to develop a comprehensive guidebook to explain the entire heart transplant process from assessment and listing to surgery and post transplant care. This guidebook draws on the experience and knowledge of the top pediatric heart transplant specialists in the U.S. and Canada.

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Pediatric Heart Transplant Guide (Parts 1-4) PDF
Part 1: Before the Transplant PDF
Part 2: The Transplant PDF
Part 3: After the Transplant PDF
Part 4: Additional Resources PDF

VIEW FLIP BOOK FORMAT


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



Pediatric Cardiomyopathy Disease Report
CCF has partnered with the National Organization for Rare Disorders to develop this rare disease report on pediatric cardiomyopathy. Written in understandable language, the report covers information about the various disease forms, symptoms, affected population, causes, and standard and investigative therapies. The report also provides a listing of support organizations and reference articles.

VIEW NORD REPORT

 

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