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Totaly, wicked long shot: Do yo know anyone with Fabry's Disease?

Jamaica_BrideJamaica_Bride
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~Lisa
Mum to Owen and Lucas Daisypath Wedding tickers>
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Re: Totaly, wicked long shot: Do yo know anyone with Fabry's Disease?

  • veloelleveloelle member
    No, but I heard about the drug users on NPR. Crazy.
    DD 7.28.06 * DS 3.29.10
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    Christmas 2011
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  • Jamaica_BrideJamaica_Bride
    Oh I must have missed it! What were they saying?

    ~Lisa
    Mum to Owen and Lucas Daisypath Wedding tickers>
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  • veloelleveloelle member
    That the drug maker hasn't made it, promised to start production again, didn't happen. That people are only taking 30% of the dose to ration. Sorry, I'm typing one handed on my phone or I'd elaborate. You might be able to find the article on NPR.org. And that it costs $300k/yr per person cuz only one co makes it. And the users want to enact an existing law that would allow another co to manufacture the drug because the primary co isn't holding up Their end of the bargan.
    DD 7.28.06 * DS 3.29.10
    image

    Christmas 2011
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  • s_angels_angel
    I do not know anyone with this disease but my BFF works for Genzyme which is the drug maker for this disease.
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