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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.
http://www.rarediseases.org/
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.
http://rarediseases.info.nih.gov/ord/
International Rare Disease Support Network
A community providing more than a 1000 different links to support groups for the people of all nations.
http://www.raredisorders.com
Human Growth Foundation
Information about growth-related disorders through education, research, and advocacy. Member driven organization.
http://www.hgfound.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
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.
http://pweb.netcom.com/~jkbarton/nomid/Html/nomid_home_page.htm
Tetrahydrobiopterin
Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.
http://www.bh4.org
Fibrous Dysplasia Support Online
For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.
http://members.cox.net/fdsupport/index.html
Kindler Syndrome
An article and case study of this rare disease. Includes links.
http://digilander.libero.it/camdic/KINDLER.html
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.
http://www.gorhams.dk
Fibrosing Mediastinitis
The least common, but most severe, late complication of histoplasmosis. Educational and research information. Includes interviews, patient stories, and a community forum.
http://www.fibrosingmediastinitis.com
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
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