Rare Disorders

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

http://www.hgfound.org/

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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/

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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

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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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Offers an Internet portal. Includes news, forums, rare disease and orphan drug info and registration forms

http://www.raredis.org

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

http://www.bh4.org

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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

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

http://digilander.libero.it/camdic/KINDLER.html

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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

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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 suppo

http://pweb.netcom.com/~jkbarton/nomid/Html/nomid_home_page.htm

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