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The Office of Rare Diseases/National Institutes of Health
ORD supports, stimulates and coordinates research on rare diseases and to respond to the needs of patients who have any one of the more than 6,000 rare diseases known today. The office supports an Information Center(http://rarediseases.info.nih.gov/html/resources/info_cntr.html) that provides individualized responses in English and in Spanish (http://rarediseases.info.nih.gov/html/resources/info_cntr_esp.html).
http://rarediseases.info.nih.gov/ord/
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
Facts About Diabetes Insipidus
Brief informational brochure regarding diabetes insipidus in patients with Langerhans cell histiocytosis.
http:www.histio.org/association/library/diabetes.shtml
Diseases and Conditions - General
QuincyNet is your comprehensive online resource directory for everything you want or need to know about Quincy. This includes attractions, businesses, services, amenities and much more!
http://www.quincynet.com/analists/b2630.htm
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/
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
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://xps.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
NORD: Degos Disease
Sample report, plus links to organisations. [Fee required for full report.]
http://www.rarediseases.org/search/rdbdetail_abstract.html?d...
Agnosia
Information sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS).
http://www.ninds.nih.gov/health_and_medical/disorders/agnosi...
Online Mendelian Inheritance in Man - Progeria
Progeria medical database resource for textual information, pictures, and reference information.
http://www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?176670
E-Medicine: Moyamoya Disease
Introduction, clinical features, differentials, work up, treatments, medication and follow up.
http://www.emedicine.com/neuro/topic616.htm
Pemphigus
Background information, traditional treatments and natural medicine, plus the author's personal account.
http://www.uoregon.edu/~sshapiro/Pemphigus/TableOfContents.h...
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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