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dysferlin · Dysferlin Deficiency
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Reply | Forward Message #48 of 592 |
Does anyone have the stats concerning the number of folks in the US
with dysferlinopathy ? Just curious . I emailed the MDA and they
actually referred me to Brad's dysferlin website , but I didn't
locate the answer there. The only "stat" I could find estimated that
people with the "limb girdle" dystrophies as a whole may number in
the low thousands. Surely we have a better guess than that.
Thu Mar 14, 2002 12:51 am

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fretmaster6
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Forward 		Message #48 of 592 |
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Does anyone have the stats concerning the number of folks in the US with dysferlinopathy ? Just curious . I emailed the MDA and they actually referred me to... 		fretmaster6
Offline Send Email 		Mar 14, 2002
12:52 am

... There isn't much in the way of reliable data (at least in the US) partly because there isn't any central place to collect it. Statistics collected on the...
baw1064
Offline Send Email 		Mar 15, 2002
6:54 am

Thanks for the reply Brad. It is very much appreciated. Maybe I'm naive , but I was very surprised the MDA didn't have any answers. Thanks again for your time....
fretmaster6
Offline Send Email 		Mar 15, 2002
5:28 pm

Thanks for the reply Brad. It is very much appreciated. Maybe I'm naive , but I was very surprised the MDA didn't have any answers. Thanks again for your time....
fretmaster6
Offline Send Email 		Mar 15, 2002
5:33 pm

Would it be appropriate to question the Neurological Society, or whatever it's called? Or, maybe better - to submit a questionaire for sending to their members...
jerrywilliams2
nevadanjw
Offline Send Email 		Mar 15, 2002
6:43 pm

It's true that there aren't good epidemiological studies for many of the rarer subtypes of muscular dystrophy. Dr. Jerry Mendell at Ohio State University...
Sharon Hesterlee
shesterlee
Offline Send Email 		Mar 15, 2002
9:10 pm

Thanks for the help everyone....
fretmaster6
Offline Send Email 		Mar 19, 2002
3:46 am
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