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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Rare Diseases Survey

VeganMonkey

Senior Member
Messages
130
Location
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
 
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