Wow Iit was so great to see your reply! Yes FMDSA is the site for info. I've been a memeber since I found it !! You must have contacted Pam Mace.. The most wonderful people!! I'm so glad that you were able to get your partner the care that she needed.!! OMG just talking to other people helps do much. I have contacted the NIH about the study and have been consented in, sent in blood. Still hoping to get to the onsite study in Baltimore with Dr Mc Donnel. There is another site on Yahoo where at lot of FMDer's post.So many with fms in kidney's too. So much I want to say LOL My mind is racing but my fingers can't keep up.Please keep in touch . I;m alway's looking for any new info on FMD that's how I wandered to this site glad I did.. Don't worry about writing too much.. It is alway's so good to hear about other people's experiences and share information.. Lorraine