Just came across this site - worth a serious gander - not only the basic info about PN, Ins. issues etc - but most improtantly for this thread - a section on advocacy - how important it is for all of us to get involved in raising awareness of our needs - and even specific information with "how tos" - how to work with and speak to media, govt officials, etc........ check it out!

http://www.neuropathyactionfoundation.org/index.htm