--and the steps taken to help to alleviate the problem are well-analyzed; I especially like the second, which is to point out how research into rare diseases has far wider implications and often leads to advances in other, unexpected areas. (This has always been one of the rationales for continuing the space program, for instance--it's arguable that without the advances there, we would not have the Internet or many portable electronics now.) And, of course, the effects of Viagra were discovered through research into helping coronary circulation. There are many other such stories.

The sad part is, neuropathy can hardly be considered a rare disorder, just a relatively unknown one, insofar as public (and researcher) perception is concerned. It is estimated that as many as one in 20 people in the US will have neuropathy at some point in life. That's far many more people than ever suffer with Multiple Sclerosis, Parkinson's, and Myesthenia Gravis combined, and yet all three of those conditions have far more money and attention devoted to them.

In terms of public perception, I often use the "survey" test. I pick up a little extra cash from time to time doing surveys, among which are those about chronic health conditions. In these, neuropathy is almost never mentioned, while the other three, and many others (i.e. peripheral artery disease, hypertension, spinal stenosis, epilepsy, etc.) are almost always asked about in the initial screening. And, amusingly, even here at Neurotalk, every time I type "neuropathy" it comes up underlined in red, meaning even the program here for the forum doesn't recognize it as a commonly used word.

These are not new observations; I've certainly ranted about it on these boards (and in many other places) multiple times in the past. I think there are multiple problems here, many of which I've discussed previously--the tendency of many to see neuropathy, if they know about it at all, as secondary to some other condition, such as diabetes; the lack of focus and frequent in-fighting among the neuropathy advocacy organizations (I often contrast this with the MS groups, who are VERY focused, cooperative, and have gotten a lot of movement in bringing new drugs to trial and attention to the condition), the lack of a galvanizing, articulate celebrity sufferer of neuropathy to speak up and advocate--not that there aren't celebrity sufferers, but we haven't had a Michael J. Fox or Annette Funicello step forward (we seem to have our sufferers advocate for something else, like Mary Tyler Moore for diabetes, or be very quiet, as Andy Griffith and Booby Short have been, and even when people such as Mother Dolores Hart speak up, the coverage often conveniently ignores the neuropathy part). I've joked that if I'm the highest profile person regularly writing about neuropathy for public consumption, now wonder the disease has a perception problem.

There are models to follow--the success of celiac disease getting coverage over the last fifteen years provides a path to follow, for example. But I think we need some big individual--a major politician or person in the performing arts--to come clean about having this to provide a tipping point.