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Hello, Other resources

kate462 Message
11 May 2013, 06:42 PM

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 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 ( ) 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?