Rare Disorders, Health Directory, Nutrition, Fitness, Beauty, Dentistry

Directory Listing(s)

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/

Aicardi Syndrome (1)

Alstr?m Syndrome (2)

Barth Syndrome (1)

Cystinosis (2)

Degos (1)

Erythromelalgia (1)

Melorheostosis (1)

Moyamoya (1)

Pemphigus (2)

Phenylketonuria (3)

Pierre Robin Syndrome (2)

Progeria (3)

Rubinstein-Taybi Syndrome (2)

Wegeners Granulomatosis (2)