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| Rare Disorders
on Health Directory
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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 |
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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/ |
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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/ |
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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 |
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E-Medicine: Moyamoya Disease
Introduction, clinical features, differentials, work up, treatments, medication and follow up.
http://www.emedicine.com |
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Facts About Diabetes Insipidus
Brief informational brochure regarding diabetes insipidus in patients with Langerhans cell histiocytosis.
http:www.histio.org |
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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 |
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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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NORD: Degos Disease
Sample report, plus links to organisations. [Fee required for full report.]
http://www.rarediseases.org |
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Pemphigus
Background information, traditional treatments and natural medicine, plus the author's personal account.
http://www.uoregon.edu |
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Syncope Trust And Reflex anoxic Seizures
An information and support group working together with individuals,families and medical professionals to offer information on syncopes and reflex anoxic seizures.
http://www.stars.org.uk |
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Xeroderma Pigmentosum Society
Xeroderma pigmentosum is caused by a rare genetic defect in ultraviolet radiation induced DNA repair mechanisms; characterized by severe sensitivity to all sources of UV radiation (especially sunlight). The XP Society provides support to those who suffer from this disease, promotes research, and strives to increase public awareness of this and related rare diseases.
http://www.xps.org |
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