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Date: | Thu, 2 Mar 1995 07:46:39 -0700 |
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<<Disclaimer: Verify this information before applying it to your situation.>>
This is taken (and paraphrased) from a piece by Susan
Oppenheimer, Science & Technology Subject Specialist, in
scan/info, a newsletter from the State of California Answering
Network, through the Los Angeles Public Library (213/228-7520;
fax 213/228-7522).
The National Organization for Rare Disorders (NORD)
(203/746-6518) provides a list of about a thousand diseases. Rare
disorders are defined as afflicting 200,000 or fewer patients in
the USA. Some of the diseases listed are *not* rare (e.g.,
autism) but are included because of frequent inquiries. The list
can be obtained from
Rare Disorders
100 Rt. 37
New Fairfield CT 06812-1783
There is also a database accesible on Compuserve. It is on the
NORD Services section. Type "GO NORD" at any prompt on the
Compuserve Information System.
For a fee (but I don't know how much) NORD will send an info
packet, written in understandable, non-medicalese. Included are
descriptions of disorders, symptoms, causes, standard treatments,
and a list of organizations and agencies to contact for more
info.
Anyone can join NORD's "Networking Program" which keeps records
of those who want to create a support group.
Jan Hill
[log in to unmask]
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