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Home > Conditions and Diseases > Rare Disorders
American Autoimmune Related Diseases Association
AARDA is the only nationa lorganization dedicated to addressing the problem of autoimmunity, the major cause of chronic illness. AARDA provides patient information and referrals.
http://www.aarda.org
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/
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/
Cystinosis Foundation
Includes brochures, FAQs, medical exchange, research, and a message forum as well as details about the organization and its events, conferences and fund raising.
http://www.cystinosisfoundation.org
E-Medicine: Moyamoya Disease
Introduction, clinical features, differentials, work up, treatments, medication and follow up.
http://www.emedicine.com
Facts About Diabetes Insipidus
Brief informational brochure regarding diabetes insipidus in patients with Langerhans cell histiocytosis.
http:www.histio.org
Information Centre for Rare Diseases and Orphan Drugs
Offers an Internet portal. Includes news, forums, rare disease and orphan drug info and registration forms.
http://www.raredis.org/
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
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/
ISN's Scleroderma from A to Z
The nonprofit International Scleroderma Network operates this world resource for reliable scleroderma medical and support information, with very well-moderated online support community, and over 1,000 pages in 18 languages.
http://www.sclero.org
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/
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/

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