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Questions for Dr. Kennedy
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Sandhoffs again
Posted by: Beth Spiller
Date: November 15, 1999 10:32 AM

I haven't been able to find anything - apparently she is the only case in the UK. I gather there's nothing that can be done to help her? Are there any support groups anywhere else that she would be able to contact to speak to someone, even if this was only a one-off?

Sandhoffs again
Posted by: Ron Kennedy, MD
Date: November 21, 1999 9:40 PM

Here is a web site: www.healthtouch.com/level1/leaflets/ninds/ninds255.htm and here are organizations to contact for information: National Tay-Sachs & Allied Diseases Association, Inc., 2001 Beacon Street, Suite 204, Brookline, MA 02146, 617-277-3965, 617-277-4463, National Organization for Rare Disorders (NORD), P.O. Box 8923, New Fairfield, CT 06812-8923, 203-746-6518 / 1-800-999-6673, I am sorry for the heartbreak this causes you. I wish there were more I could offer.



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