Have I missed something? RSDSA.org is a national advocate for patients and according to their website uses 93% of funding for program services which includes research. I just joined today and they also provide free membership.
It looks like they are trying to do all the right things and the doctors affliated with them I have heard mentioned on these boards a lot.
They also have posters that can be printed to raise local awareness...I've just started researching what they have available but hoping to find some brochures to leave around town. Got to start somewhere
Jeanne