Foundations and other funding sources OUTSIDE NIH but listed on NIH’s site. Most of these institutions offer grants to worldwide researchers. Surprisingly, many do not have special programs in place for patients or patients organisations beyond somewhat generic “patient safety” wording in their application process, even those funding opportunities from patient-led organisations!

In any case, please take the time to go through this list, and pass it on to the researchers/networks you are involved in.

http://www.niaid.nih.gov/researchfunding/ann/Pages/found.aspx