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RE: [Myotubular_Myopathy] Re: Really only 250 documented cases?

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  • Wendy
    Jon, as ever, you are so well researched and an incredible source of information! I can believe these figures, and I think the families we have met so far are
    Message 1 of 7 , Aug 15, 2006
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      Jon, as ever, you are so well researched and an incredible source of information!  I can believe these figures, and I think the families we have met so far are just the tip of the iceberg!

       

      My personal experience is that in the UK:

      (Message over 64 KB, truncated)

    • TONI ABRAM
      Hello I would agree with Wendy - I come across lots of people who make themselves known then lurk or disappear off the scene entirely. When people ask me for
      Message 2 of 7 , Aug 15, 2006
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