Hi, Beanie300. I have been through a lot of the same crap as you, and am still looking for truth. My best sources, so far, have been NIH (OMIM), Mayo and the University of Helsinki Hospital. And I have received a lot of suggestions in response to my writing about Gelsolin and posting it on line. Thing is, the real problem is that the medical world is just now learning to diagnose a lot of this stuff. Seems now that every diagnosis must be on the molecular level, dealing with the tiniest bits of disease. Symptoms and signs just do not cut it now. I have about 250 medically seen S&S which pin it down pretty well, but are not as good as Mass Spectrometry or even Congo Red. But OMIM is a great place to start. Online Mendelian something and NIH. My last ten doctors have all had to be educated to the existence of this knowledge.