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dysferlin · Dysferlin Deficiency
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Reply | Forward Message #50 of 592 |
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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. Your efforts as a whole in
the "dysferlin" matter mean a lot to me.
Fri Mar 15, 2002 5:28 pm

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fretmaster6
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Forward 		Message #50 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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