Enter the disease name in google and one of the first results will likely be the medical association that deals with the disease. Check out its web site. Others in the same situation are a good source of info so google for the disease name along with "support group" and also try the disease name and "forum". Abstracts of the medical literature summarize the state of the art and recommended protocols. Abstracts to all medical literature can be found at http://www.ncbi.nlm.nih.gov/pubmed . Enter the disease name in the search box on that page and then in the left hand panel click on Reviews to get all the abstracts of review papers. Registered clinical trials are shown at: http://www.clinicaltrials.gov . In the search box on that page enter the disease name.