Rare Disorders
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.
Fibrous Dysplasia Support Online
For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.
Human Growth Foundation
Information about growth-related disorders through education, research, and advocacy. Member driven organization.
Information Centre for Rare Diseases and Orphan Drugs
Offers an Internet portal. Includes news, forums, rare disease and orphan drug info and registration forms
Kindler Syndrome
An article and case study of this rare disease. Includes links.
Lymphangiomatosis and Gorham's Vanishing Bone Disease
Provides general information and a personal account, including pictures and X-rays. Also offers patient contact and an email discussion group.
National Organization for Rare Disorders, Inc.
Information about NORD, its programs, special events and the variety of services offered. Includes a rare disease, organization and orphan drug database. Diseases are listed alphab…
Nomid /Cinca
Resource for parents and patients suffering from Neonatal Onset Multi-inflammatory Disease Chronic, or Infantile, Neurologic, Cutaneous and Articular syndrome. Site maintained by …
Office of Rare Diseases
Information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient suppo…
Tetrahydrobiopterin
Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.
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