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Does anyone know if any trials are in Canada for rare diseases? I have fahr's disease and there's a 50% chance that my 15 son will have it later in life. Anyone with any info would be great!!!!
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Oh Canada!!!
- By Macbeth
- Posted November 21, 2008 at 10:40 am · 3 replies
- In Support for clinical research participants and families
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- By Thoreau85
- Posted December 1, 2008 at 2:24 pm
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Hi,
I think your best first step would be to contact C.O.R.D which is the Canadian Organization for Rare Disorders. This is their website: http://www.cord.ca/index.php/site
Hopefully they can point you in the right direction. Good luck to you and your son.
- By Macbeth
- Posted December 4, 2008 at 6:35 pm
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Thanks, I didn't even know there was that in Canada!! Merry Christmas!!
- By DougB
- Posted December 5, 2008 at 8:03 pm
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My grandfather was diognosed with Fahr's in the late 70's and lived another 12 years. He was in his early 70's when he passed. At the time he was diognosed, Mayo thought 50% of his downline, might get Fahr's and only the men. Out of his 8 children, 6 have the Fahr's, 3 ladies & 3 men, one of the men has passed. The ages of the group that has the Fahr's is between 55 and 73. All are in wheel chairs. The progression of my family has went from using canes to walkers, then wheel chairs, then bed ridden. I'm not stateing these things to frighten anyone, but to explain the facts. We have been in a study of the disease since November 28th, 2000 with the Mayo Clinic.
http://www.ninds.nih.gov/disorders/fahrs/fahrs.htm
Not alot of progress has been gained in our studies, but they are doing gene studies that might be helpfull.
Dr J.L. Groudreau is the investigator that we deal with.
I have noticed with my mother, excercise seems to help with her motor skills.
Doug
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