LINKS & RESOURCES:
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.
Ataxia Foundation Home Page
Established in 1957 with the primary mission of encouraging and supporting
research into hereditary ataxia, a group of neurological disorder.
Network of Ataxia Friends
Provides medical and general information, mailing lists, newsletters, and assistance
in finding a national or local support group.
Ataxia Parents Group
Formed by a small group of parents, site provides online support, FAQ's, and
information about research articles.
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.
Living with Inherited Metabolic Diseases (CLIMB)
National umbrella organization working on behalf of children, young people
and families affected by metabolic disease.
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.
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.
Neuromuscular Disease Center
The site offers comprehensive information about various neuromuscular diseases
including those associated with cardiomyopathy.
Offers support, networking and information for people whose lives are touched
by this syndrome.
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.
Federation of worldwide Pompe patient groups seeking to coordinate activities
and share experience and knowledge among different groups.
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.
Maltase Deficiency Association (US)
Formed to assist in funding research and promoting public awareness of Acid
Maltase Deficiency, also known as Pompe's Disease.
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A self-help organization providing information and support to families of children with inborn errors of metabolism.