Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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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

    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.
    kevinj and Valentijn like this.

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