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. For Spanish language materials, click here.
To place an order for any of the below items, please download order form 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, restrictive and left ventricular non-compaction cardiomyopathy was designed to provide key information to parents, caregivers, and healthcare professionals.
| Pediatric Cardiomyopathy |
PDF |
| Dilated Cardiomyopathy |
PDF |
| Hypertrophic Cardiomyopathy |
PDF |
| Restrictive Cardiomyopathy |
PDF |
| Left Ventricular Non-Compaction Cardiomyopathy |
PDF |
|
|
|
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 PREVIEW VIEW VIDEO
|
|
|
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.
VIEW VIDEO
|
|
|
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 |
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
|
 |
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.
| Entire Pediatric Heart Transplant Guide (110 pgs) |
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) to bring you an additional resource to complement CCF’s Understanding Pediatric Cardiomyopathy booklet. Written by pediatric cardiomyopathy experts for the layperson, this resource provides an overview of signs, symptoms, causes, diagnosis methods, therapies and treatments for the various types of cardiomyopathy.
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
|
Family Assistance Program
