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Diseases and Conditions > Rare Disorders
Rare Disorders
Aicardi Syndrome
Alström Syndrome
Barth Syndrome
Pierre Robin Syndrome
Rubinstein-Taybi Syndrome
Wegeners Granulomatosis


The FMDSA website is designed to help patients, healthcare workers and physicans find the latest information on Fibromuscular Dysplasia.

Fatty acid Oxidation Disorder (FOD) Network
contains online newsletter and support group for families touched by this disorder. Stories, memories, and research updates.

National Organization for Rare Disorder
Information about NORD, its programs, special events and the variety of services offered.

A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.

Contact a Family
Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the Rare Disorders Alliance - UK.

Human Growth Foundation
Information about growth-related disorders through education, research, and advocacy. Member driven organization.

Lymphangiomatosis and Gorham's Vanishing Bone Disease
Provides general information and a personal account, including pictures and X-rays.

Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.

XLH Network
Patient support group for XLH, a genetic condition also known as X-Linked Hypophosphatemia, X-Linked Hypophosphatemic Rickets, Familial Hypophosphatemia, Vitam


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