I would note that some organizations ARE advocating, rather than fundraising, specifically the FAIR Foundation http://www.fairfoundation.org/, which advocates for a reallocation of NIH research dollars so that our tax dollars fund research taking into consideration the incidence, mortality, suffering, morbidity, communicability and preventability of each disease, not simply based on who screams most loudly for the money. They have not necessarily succeeded in this mission, but they do raise awareness of the misallocation of research dollars, and for that, all of us should support their mission.
It seems to be a good project, with good intentions. The problem I see with this sentence on their web "Diseases that are presently underfunded will receive increased funding and others that are overfunded will receive fewer allocations." is that diabetes, for instance, might fall under the overfunded, although most of the money goes to prevention/control, not cure.
Here my 2 cents on this topic:
http://www.healing-diabetes.com/world-diabetes-day-2012-gift
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David, you are so right! There is very little advocacy.