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Rare Disorders (Subscribe)

Links

Cherubs

http://www.cherubs-cdh.org

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

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Contact a Family

http://www.cafamily.org.uk

Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the Rare Disorders Alliance - UK.

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European Organisation for Rare Diseases

http://www.eurordis.org

Alliance of patient associations dedicated to improving the quality of life of all people living with rare diseases in Europe.

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Fibrous Dysplasia Support Online

http://members.cox.net/fdsupport/index.html

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

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Human Growth Foundation

http://www.hgfound.org/

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

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Information Centre for Rare Diseases and Orphan Drugs

http://www.raredis.org/modules/news/

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

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Kindler Syndrome

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

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

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National Organization for Rare Disorders, Inc.

http://www.rarediseases.org/

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.

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Nomid /Cinca

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

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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Office of Rare Diseases

http://rarediseases.info.nih.gov/

Information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups.

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Tetrahydrobiopterin

http://www.bh4.org

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

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