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Old 04-09-2012, 08:09 PM
a-mom a-mom is offline
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Join Date: Jan 2012
Posts: 7
10 yr Member
a-mom a-mom is offline
Junior Member
 
Join Date: Jan 2012
Posts: 7
10 yr Member
Default Fahr's being studied at NIH

Paula (and all),

Yes, you can live anywhere and be studied at NIH. E-mail Rena Godfrey at godfreyra at mail.nih.gov (replace "at" with @) -- she's a physician's assistant working in the Rare and Undiagnosed Diseases program.

They are currently studying a group of about 14 patients and looking for more. Through them, I learned that there was a recent Chinese study that identified a gene for Fahr's, but none of the patients in the NIH group have the gene, so they are saying it's polygenic (more than one gene can cause it) in nature. Symptoms vary considerably by individual, so the (rather scary) information on the Internet may or may not be applicable to you.

Please do contact them. The more people they have, the more they (and we) will learn. Treatment is free.

A-mom
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