HopeSprings Posted October 27, 2012 Report Share Posted October 27, 2012 The sqeaky wheel gets the oil...In “Disease Politics and Medical Research Funding: Three Ways Advocacy Shapes Policy,” a paper published in the October issue of the American Sociological Review, Rachel Kahn Best analyzed data on 53 diseases over a 19-year period from 1989-2007. She found that those diseases tied to strong advocacy organizations received millions of dollars more in research funding over the period than others whose advocates were not as strong.http://scienceblog.com/56900/patient-led-advocacy-has-changed-how-us-government-funds-medical-research/#4R3t02RbS4XPcDiY.99 Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted October 28, 2012 Report Share Posted October 28, 2012 This makes good sense. Don't think Dysautonomia made the top 18. It is so difficult to build interest and awareness of our condition bc there is so little understanding of it in the general medical community not to mention the public. But, if we all did a little bit, working w docs in our areas to spread the word and sharing out stories with others maybe one day we could be toward the top of that list. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 29, 2012 Author Report Share Posted October 29, 2012 No, we're definitely not at the top of the list or even ON the list. The thing is we have the numbers - it's hard to find good statistics (so don't quote me), but I've read there are at least 500,000 of us with POTS in the U.S. - more of us than are diagnosed with Multiple Sclerosis and about the same number as those diagnosed with Parkinson's. We need a voice - and like you said Kelly, if we all do our part, maybe one day we'll get there! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 29, 2012 Author Report Share Posted October 29, 2012 Here is where research dollars go:http://report.nih.gov/categorical_spending.aspx Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted October 30, 2012 Report Share Posted October 30, 2012 That's a very interesting list. Wouldn't we be in the "rare diseases" category? You amaze me with the data you bring. Very cool. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 30, 2012 Author Report Share Posted October 30, 2012 I think POTS studies probably fall under heart disease, neuropathy, CFS. I didn't think of Rare Diseases - yes, maybe we fall under that too. Be nice if we had our own dysautonomia category. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 30, 2012 Author Report Share Posted October 30, 2012 I read a great blog article about this topic which I felt very inspired by. It gives more detail on the numbers and what can be done. Being sick all these years has left me feeling helpless - until recently- thanks to fellow Potsies trying to get things done. I don't think I'm allowed to post links to blogs here, but if anyone is interested in reading it, I think I can send info through PM. Quote Link to comment Share on other sites More sharing options...
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