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Rare Disorders
Directory > Health > Conditions and Diseases > Rare Disorders

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Web Sitesi

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
Reviews Rating: Not yet Rated Whois Check

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
Reviews Rating: Not yet Rated Whois Check

Kindler Syndrome
An article and case study of this rare disease. Includes links.
http://digilander.libero.it/camdic/KINDLER.html
Reviews Rating: Not yet Rated Whois Check

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
Reviews Rating: Not yet Rated Whois Check

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

http://www.bh4.org
Reviews Rating: Not yet Rated Whois Check

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
Reviews Rating: Not yet Rated Whois Check

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
Reviews Rating: Not yet Rated Whois Check

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

http://www.hgfound.org/
Reviews Rating: Not yet Rated Whois Check

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
Reviews Rating: Not yet Rated Whois Check

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/
Reviews Rating: Not yet Rated Whois Check

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/
Reviews Rating: Not yet Rated Whois Check

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
Reviews Rating: Not yet Rated Whois Check

 


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