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Rare Disorders
Home : Diseases and Conditions : Rare Disorders

Aicardi Syndrome (1) Moyamoya (1)
Alström Syndrome (2) Pemphigus (2)
Barth Syndrome (1) Phenylketonuria (3)
Cystinosis (2) Pierre Robin Syndrome (2)
Degos (1) Progeria (3)
Erythromelalgia (1) Rubinstein-Taybi Syndrome (2)
Melorheostosis (1) Wegeners Granulomatosis (1)

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
Lymphangiomatosis and Gorham's Vanishing Bone Disease
Provides general information and a personal account, including pictures and X-rays.
http://www.gorhams.dk
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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