The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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Rare Diseases Survey

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by VeganMonkey, Aug 26, 2014.

  1. VeganMonkey

    VeganMonkey Senior Member

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    Australia
    Interesting survey

    Really important survey for us - to get our conditions 'on the map'. It's by WA government but is for all Australians (don't think you have to be Australian to fill this in). About 40 questions on topics like delays in diagnosis, misdiagnosis, adequacy of research, availability of targeted treatments etc

    Theoretically EDS/POTS/FM/ME/CFS are not rare (in occurrence - just under diagnosed as it is so hard to get a diagnosis), but they are classified as rare, and they are the type of condition they are targeting.

    There is plenty of room for comments throughout but none at the very end so have your say early on - otherwise it is very good, anonymous and non-intrusive.

    https://www.surveymonkey.com/s/AustralianRDsurvey
     
    kevinj and Valentijn like this.

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