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From: wtm@bunker.uucp (Bill McGarry)
Newsgroups: misc.handicap
Subject: Re: Primary Lateral Sclerosis
Message-ID: <15885@bunker.UUCP>
Date: 27 Nov 90 20:47:07 GMT
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Reply-To: wtm@bunker.uucp (Bill McGarry)
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Index Number: 11977

Mary Shafer writes:
>Does anyone have any information on primary lateral sclerosis?
>
>Is there a support group?  If not, is there a general support
>group for gait disorders?

Although I do not know of any support group just for primary lateral
sclerosis, there are two organizations that may be able to help.
The first is the National Organization for Rare Disorders (NORD),
which is an organization that specializes in information on rare
diseases and will put you in contact with other people or parents of
children with the same disease or disorder.  Their address is:

	The National Organization for Rare Disorders (NORD)
	P.O. Box 8923
	New Fairfield, CT 06812 (USA)
	Phone: (203) 746-6518
	       (800) 999-NORD

NORD can also be reached on Compuserve.

NORD has information on some 500 rare disorders and also has
information on orphan drugs.

There is also the ALS Association:;

The Amyotrophic Lateral Sclerosis Association 
15300 Ventura Boulevard, Suite 315 
Sherman Oaks, CA 91403 (818) 990-2151 

				Hope this helps and good luck,
				Bill McGarry
				(203) 337-1518

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