Rare Disorders - Health Directory, Long Term Care, Nursing

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.

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.

Human Growth Foundation
Information about growth-related disorders through education, research, and advocacy. Member driven organization.

Lymphangiomatosis and Gorham's Vanishing Bone Disease
Provides general information and a personal account, including pictures and X-rays.

National Organization for Rare Disorders, Inc.
Information about NORD, its programs, special events and the variety of services offered.

Tetrahydrobiopterin
Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.

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.

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)