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Rare Disorders

Sub-categories: Agnosia | Aicardi Syndrome | Alström Syndrome | Barth Syndrome | Cerebrocostomandibular Syndrome | Cleidocranial Dysplasia | Cystinosis | Degos | Erythromelalgia | Jacobsen Syndrome | Melorheostosis | Moyamoya | Ollier Disease | Pemphigoid | Pemphigus | Phenylketonuria | Pierre Robin Syndrome | Progeria | Rubinstein-Taybi Syndrome | Tyrosinemia | VATER Syndrome

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 alphabetically for easy searching.

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.

Fibrosing Mediastinitis
The least common, but most severe, late complication of histoplasmosis. Educational and research information. Includes interviews, patient stories, and a community forum.

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.

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 patients, parents and friends for their counterparts worldwide. Email support group at eGroups.

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