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Aicardi SyndromeMoyamoya
Alström SyndromePemphigus
Barth SyndromePhenylketonuria
CystinosisPierre Robin Syndrome
DegosProgeria
ErythromelalgiaRubinstein-Taybi Syndrome
MelorheostosisWegeners 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


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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