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Genetic and Rare Diseases Information Center: ME webpage

Discussion in 'General Advocacy Discussions' started by Andy, Mar 2, 2019.

  1. Andy

    Andy Committee Member & Outreach

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  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    What a good website. They even ask for suggestions to add re research, organisations etc
     
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  3. Webdog

    Webdog Senior Member (Voting Rights)

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    Got an email from GARD (NIH) this week. They agreed to remove the statement that, in most cases, symptoms of CFS lessen over time. The relevant bits of the email follow (bolding and spacing mine):
    https://rarediseases.info.nih.gov/diseases/7121/chronic-fatigue-syndrome
     
    Last edited: May 11, 2019
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