Children's Cardiomyopathy Foundation



The Pediatric Cardiomyopathy Registry
This North America Pediatric Cardiomyopathy Registry was established to describe the epidemiologic features and clinical course of selected cardiomyopathies in children 18 years or younger, and to promote the development of etiology-specific treatments.

National Organization for Rare Disorders - "Pediatric Cardiomyopathy"
National voluntary heath agency that provides programs and services related to education, advocacy, and research for orphan diseases affecting fewer than 200,000 people. This report covers the 4 forms of cardiomyopathy and it's related symptoms, treatment, research and related support resources.

ShaRe Registry
The Sarcomeric Human Cardiomyopathy Registry (SHaRe) is a multi-center, international repository of clinical and laboratory data on individuals and families with genetic heart disease developed as a collaboration with several world-leading cardiovascular centers.

American Heart Association
Comprehensive site with articles on cardiomyopathy, congestive heart failure, arrhythmias, and sudden cardiac death. Also includes practical section on congenital and children's heart disease.

National Heart, Lung and Blood Institute
The National Institute of Health division provides basic information on cardiomyopathy, heart failure and other cardiovascular diseases as well as listing of national clinical studies.

Cardiomyopathy Association (UK)
A UK organization that provides information and support on the main form of the heart muscle disease known as cardiomyopathy.

Hypertrophic Cardiomyopathy Association (US)
A US support group dedicated to this particular type of cardiomyopathy.

HCM Association of Canada
Provides information and support to Canadians diagnosed with hypertrophic cardiomyopathy.

Non-Compaction Cardiomyopathy Group
A place for patients and their friends & family to participate in a support community and access information related to non compaction and left ventricular non compaction cardiomyopathy. is a repository of information on research and treatment of Arrhythmogenic Right Ventricular Cardiomyopathy.
Johns Hopkins Hospital site that provides information on the ARVD registry, physician references, news, diagnosis, support and research.

Familial Dilated Cardiomyopathy Project
Oregon Health and Science University site that provides disease, genetics and research information about familial dilated cardiomyopathy.

Mayo Hypertrophic Cardiomyopathy Clinic
Provides a complete medical overview of the disease and important information for HCM patients.

Mayo Clinic - "NIH Conference on Inflammation and Immunity in Dilated Cardiomyopathy"
Webcast videos and presentations available from the May 21-22, 2004 National Institute of Health Scientific Workshop on viral forms of dilated cardiomyopathy.

Myocarditis Foundation
Information for patients, their families, and health care providers on myocarditis, a leading cause of dilated cardiomyopathy in children and adults

St. Luke's-Roosevelt HCM Program
Two articles titled "Dynamic Left Ventricular Outflow Obstruction in HCM Revisited" and "Medical Treatment of HCM".

Cincinnati Children's Hospital Heart Center
Brief but thorough overview of different forms of cardiomyopathy, typical symptoms and treatments for each type. Also offers a comprehensive Heart Encyclopedia covering pediatric cardiac disorders.

The Cleveland Clinic Heart Center
Provides information about hypertrophic cardiomyopathy as well as other cardiomyopathies.

C.S. Mott Children's Hospital - Congenital Heart Center Patient Education Information
University of Michigan site covering the diagnosis and treatment of various pediatric heart problems, invasive and noninvasive tests and procedures, and caring for your child. There are also webpages written specifically for children.

Your Total Health - Heart Health Section
NBC and iVillage sponsored health care site covering a range of heart-related topics such as cardiomyopathy, heart failure and pediatric hearts. The site provides cardiologist reviewed health guides, video clips, Q&A, and a community message board. - "Cardiomyopathy"
Search site with quick overview on the disease.

The Yale Library Heart Book
Various articles on heart disease in the young, about the heart and how it works, heart disorders, diagnosis, treatment methods and terminology.

Internet Medical Education
General educational site for cardiovascular diseases with subject reviews on arrhythmias and hypertrophic cardiomyopathy.