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Home > Diseases and Conditions > Rare Disorders
Rare Disorders

Aicardi Syndrome	Moyamoya
Alstr?m Syndrome	Pemphigus
Barth Syndrome	Phenylketonuria
Cystinosis	Pierre Robin Syndrome
Degos	Progeria
Erythromelalgia	Rubinstein-Taybi Syndrome
Melorheostosis	Wegeners Granulomatosis

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

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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