Children's Cardiomyopathy Foundation



The National Organization of Rare Disorders (NORD)
Dedicated towards the prevention, treatment and cure of rare "orphan" diseases. Maintains databases on diseases, organizations, drug developments and news.

NIH Office of Rare Diseases
National Institutes of Health site that covers rare disease and genetics information, patient advocacy groups, research and clinical trails, patient travel and lodging resources, and medical publications.

Alstrom Syndrome International
Committed to providing support, information, and coordination worldwide to families and professionals related to Alstrome Syndrome, a hereditary, multi-system disease.

National Ataxia Foundation Home Page
Established in 1957 with the primary mission of encouraging and supporting research into hereditary ataxia, a group of neurological disorder.

International Network of Ataxia Friends
Provides medical and general information, mailing lists, newsletters, and assistance in finding a national or local support group.

Friedreich's Ataxia Parents Group
Formed by a small group of parents, site provides online support, FAQ's, and information about research articles.

The Barth Syndrome Foundation
The Foundation's mission is to guide the search for a cure, to educate and support physicians and to create a caring community for affected families.

Children Living with Inherited Metabolic Diseases (CLIMB)
National umbrella organization working on behalf of children, young people and families affected by metabolic disease.

Fatty Oxidation Disorders Family Support Group
International organization providing online support and education for affected families and medical professionals. Also offers a newsletter and forum for sharing of ideas and stories.

United Mitochondrial Disease Foundation
The UMDF mission is to promote research for the cure and treatment of mitochondrial disease and to provide support to affected families.

The Neuromuscular Disease Center
The site offers comprehensive information about various neuromuscular diseases including those associated with cardiomyopathy.

Noonan Support Group
Offers support, networking and information for people whose lives are touched by this syndrome.

Pompe Community
Genzyme's website for individuals and families who are living with Pompe disease, a lysosomal storage disease (metabolic muscle disease), with prominent symptoms of cardiomyopathy in infants.

International Pompe Association
Federation of worldwide Pompe patient groups seeking to coordinate activities and share experience and knowledge among different groups.

The Association for Glycogen Storage Disease (UK)
An UK organization offering disease guides, research updates, links, bulletins, and support for those affected by a form of Glycogen Storage Disease.

Acid Maltase Deficiency Association (US)
Formed to assist in funding research and promoting public awareness of Acid Maltase Deficiency, also known as Pompe's Disease.

Organic Acidemia Association
A self-help organization providing information and support to families of children with inborn errors of metabolism.