EDUCATIONAL MATERIALS
An important part of CCF's mission is increasing access to reliable information on pediatric cardiomyopathy and empowering parents and patients with a variety of educational materials. CCF works with different healthcare organizations and medical societies to develop such materials.
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For Spanish language materials, click here.
Understanding Pediatric Cardiomyopathy
This 16-page overview booklet and accompanying inserts on arrhythmogenic, dilated, hypertrophic, noncompaction, and restrictive cardiomyopathy were designed to provide key information to parents, caregivers, and healthcare professionals.
Pediatric Cardiomyopathy
Arrhythmogenic Cardiomyopathy
Dilated Cardiomyopathy
Hypertrophic Cardiomyopathy
Noncompaction Cardiomyopathy
Restrictive Cardiomyopathy
Know Your Heart: Genetic Testing for Cardiomyopathy Families
This short video provides families with a basic overview of the genetic testing process and features two families living with cardiomyopathy and the pediatric cardiologists, geneticist and genetic counselor that they work with. The 7-minute video covers a range of topics, including what genetic testing is, when it should be considered, how the process works, and why it can be beneficial to certain families.
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.
Guide for School Personnel
Guide for Parents
Sample School Plans and Letters
Resource for Danon Disease
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.
Transitioning to Adult Care Toolkit for Teens
CCF offers a toolkit for teenagers with cardiomyopathy to assist in making the transition from pediatric to adult care. The toolkit offers practical guidelines, a readiness assessment, medical summary form, and a sample transition plan. To download the toolkit, click here.
Pediatric Heart Failure: A Guide for Parents and Families
This guidebook provides a comprehensive overview of heart failure, including signs and symptoms, diagnostic testing, medications, and advanced heart failure therapies. The resource draws on the experience and knowledge of the top pediatric heart failure specialists in the U.S. and Australia.
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.
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.
