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Rare Disorders
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Aicardi Syndrome
Moyamoya
Alstr?m Syndrome
Pemphigus
Barth Syndrome
Phenylketonuria
Cystinosis
Pierre Robin Syndrome
Degos
Progeria
Erythromelalgia
Rubinstein-Taybi Syndrome
Melorheostosis
Wegeners Granulomatosis
Listings
Cherubs
A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.
http://www.cherubs-cdh.org
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.
http://www.cafamily.org.uk
Human Growth Foundation
Information about growth-related disorders through education, research, and advocacy. Member driven organization.
http://www.hgfound.org/
Lymphangiomatosis and Gorham's Vanishing Bone Disease
Provides general information and a personal account, including pictures and X-rays.
http://www.gorhams.dk
National Organization for Rare Disorders, Inc.
Information about NORD, its programs, special events and the variety of services offered.
http://www.rarediseases.org/
Tetrahydrobiopterin
Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.
http://www.bh4.org
XLH Network
Patient support group for XLH, a genetic condition also known as X-Linked Hypophosphatemia, X-Linked Hypophosphatemic Rickets, Familial Hypophosphatemia, Vitamin D-Resistant Rickets.
http://www.xlhnetwork.org/
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