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Rare Diseases and Disorders
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National Organization for
Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: 1-203-744-0100
or 1-800-999-6673(tollfree) or 1-203-797-9590(TDD)
Fax:1-203-798-2291
E-mail: orphans@rarediseases.org
Website: www.rarediseases.org/
"The National Organization for Rare Disorders (NORD), a 501(c)3
organization, is a unique federation of voluntary health organizations
dedicated to helping people with rare "orphan" diseases and assisting the
organizations that serve them. NORD is committed to the identification,
treatment, and cure of rare disorders through programs of education,
advocacy, research, and service."
The site has an alphabetical listing of all rare diseases and
disorders with information on each. The site also has information on research programs.
-SLG
Site contains stories of those suffering from rare
diseases as well as ongoing research on many diseases. -TJ
Office of Rare Diseases
National Institutes of Health
6100 Executive Boulevard, 3B-01
Bethesda, Maryland 20892
Phone: 1-301-402–4336
Fax: 1-301-480–9655
E-mail: ord@od.nih.gov
Website: rarediseases.info.nih.gov/
"The Office of Rare Diseases (ORD) was
established in 1993 within the Office of the Director of the National
Institutes of Health (NIH), the Federal focal point for biomedical research.
ORD coordinates and supports rare diseases research, responds to research
opportunities for rare diseases, and provides information on rare diseases.
Public Law 107-280, the Rare Diseases Act of 2002, established the ORD by
statute."
This site offers information on rare diseases as
well as clinical trial and research about these diseases. -TJ
The ORD website gives information
about all of the most rare diseases. It provides information about treatment
centers and genetic testing. (PT)
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