Rare Disorders Web Directory.


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Health > Conditions and Diseases > Rare Disorders

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Home > Health > Conditions and Diseases > Rare Disorders
Directory of Web Resources @ Expo Central : Rare Disorders

Health > Conditions and Diseases > Rare Disorders : Categories

Agnosia (8)
Aicardi Syndrome (8)
Alström Syndrome (4)
Barth Syndrome (4)
Cerebrocostomandibular Syndrome (2)
Cleidocranial Dysplasia (3)
Cystinosis (8)
Degos (4)

Erythromelalgia (4)
Jacobsen Syndrome (1)
Melorheostosis (1)
Moyamoya (7)
Ollier Disease (1)
Pemphigoid (1)
Pemphigus (6)

Phenylketonuria (9)
Pierre Robin Syndrome (4)
Progeria (10)
Rubinstein-Taybi Syndrome (3)
Tyrosinemia (3)
VATER Syndrome (7)
Wegener's Granulomatosis (10)

Health > Conditions and Diseases > Rare Disorders : Web Resources

Health > Conditions and Diseases > Rare Disorders : Web-Sites

1. Cherubs [ Report dead link ]

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

2. Contact a Family [ Report dead link ]

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

3. Fibrous Dysplasia Support Online [ Report dead link ]

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

4. Human Growth Foundation [ Report dead link ]

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

http://www.hgfound.org/

5. Information Centre for Rare Diseases and Orphan Drugs [ Report dead link ]

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

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

6. Kindler Syndrome [ Report dead link ]

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

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

7. National Organization for Rare Disorders, Inc. [ Report dead link ]

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/

8. Nomid /Cinca [ Report dead link ]

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

9. Office of Rare Diseases [ Report dead link ]

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/

10. Tetrahydrobiopterin [ Report dead link ]

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

http://www.bh4.org

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Health > Conditions and Diseases > Rare Disorders : Web Resources

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