Top : Rare Disorders

Agnosia Aicardi Syndrome Alstr%c3%b6m 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 Wegeners Granulomatosis

Rare Disorders - site listings

Mascot McCune Allbright Syndrome Communication Online Town - Collects all the brand new studies in McCune syndrome and perform a FAQ session to explain what the disease is. It is a sharing experience place for ill people.

Kindler Syndrome - An article and case study of this rare disease. Includes links.

Fibrous Dysplasia Support Online - For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.

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.

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.

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 support groups.

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

Information Centre for Rare Diseases and Orphan Drugs - Offers an Internet portal. Includes news, forums, rare disease and orphan drug info and registration forms

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.

International Rare Disease Support Network - A community providing more than a 1000 different links to support groups for the people of all nations.

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

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

Cherubs - A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.

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.