Acid Maltase Deficiency Association
Formed to assist in funding research and promoting public awareness of Acid Maltase Deficiency, also known as Pompe's Disease.
Alstrom Syndrome International
Committed to providing support, information, and coordination worldwide to families and professionals related to Alstrome Syndrome, a hereditary, multi-system disease.
The Association for Glycogen Storage Disease
An UK organization offering disease guides, research updates, links, bulletins, and support for those affected by a form of Glycogen Storage Disease.
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.
Friedreich's Ataxia Parents Group
Formed by a small group of parents, site provides online support, FAQ's, and information about research articles.
International Network of Ataxia Friends
Provides medical and general information, mailing lists, newsletters, and assistance in finding a national or local support group.
International Pompe Association
Federation of worldwide Pompe patient groups seeking to coordinate activities and share experience and knowledge among different groups.
Mended Little Hearts (MLH)
Mended Little Hearts is a program of Mended Hearts Inc., a non-profit, volunteer-based organization working nationally and in communities to provide hope, help, healing and support to children with congenital heart defects and their families.
Information for patients, their families, and health care providers on myocarditis, a leading cause of dilated cardiomyopathy in children and adults.
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.
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.
The Neuromuscular Disease Center
The site offers comprehensive information about various neuromuscular diseases including those associated with cardiomyopathy.
NIH Office of Rare Diseases
National Institutes of Health site that covers rare disease and genetics information, patient advocacy groups, research and clinical trials, patient travel and lodging resources, and medical publications.
Noonan Syndrome Foundation
Offers support, networking and information for people whose lives are touched by this syndrome.
Organic Acidemia Association
A self-help organization providing information and support to families of children with inborn errors of metabolism.
Led by a European consortium, Orphanet is a reference portal for information on rare diseases and “orphan” drugs, diagnostic tests, research and trials, and patient organizations. The page contents can be translated into French, Spanish, German, Italian and Portuguese.
Parent Project Muscular Dystrophy
PPMD's focus is on research, education, advocacy and patient care related to Duchene muscular dystrophy, which can lead to dilated cardiomyopathy.
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.
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.
Your Guide to Medicare Special Needs Plans (SNPs)
Provides information on SNPs, including how they work, services and benefits, joining, and deciding if a SNP is right for your family.