Hi, my name is Kate and I was just diagnosed with BHD this past month. I am looking for all the resources I can find so I joined this site.
I also use the bhdsydrome.org site, NIH and NORD sites, the VHL Alliance (which had a topic section for BHD) and a closed BHD Facebook group which is easy to join, just ask ( https://www.facebook.com/groups/454615147912181/ )
I found that he BHD syndrome site has the best information for BHD, and the facebook page has the most active discussions.
What BHD resources do you find helpful?