In addition, there is an active, patient-led BHD Discussion Forum on Facebook, which can be found here. This is a private group, so you will have to request permission to join. The group is open to anyone with an interest in BHD.
The VHL Family Alliance also runs a forum on Inspire, where a BHD group has been set up to build a patient support network. Do read this letter from Jean Sohrakoff, a BHD patient, encouraging other members of the BHD community to join the forum.
There are four categories: Living with BHD syndrome, Living with BHD Syndrome – Private, the BHD Research Blog and BHD Research Resources. To access the Living with BHD Syndrome – Private forum, you will need to apply by writing to contact@BHDSyndrome.org. If you have access to Living with BHD Syndrome – Private, posts will only appear when you log in.
Please bear in mind when contributing that, with the exception of the Living with BHD Syndrome – Private forum, anyone can read forum messages and they will be indexed by search engines.
Living with BHD Syndrome
Introduce yourself here: who you are, where you’re from and your BHD story. Share as much or as little as you want. This is also the place for any specific questions about genetic testing and counselling, your symptoms and treatments, or any personal or legal issues. Ask questions and share experiences…
Living with BHD Syndrome – Private
A private version of the Living with BHD Syndrome forum. Introduce yourself, share stories and advice and ask questions. Please note: because this category is private, posts are only visible if you are logged in and have been granted access. To apply for access, please email contact@BHDSyndrome.org. If you have access and do not see any posts on the Living with BHD Syndrome – Private forum page, please log in and return to the Forum.
A technical resource available to all in the BHD field. Find out about new laboratory materials and relevant conferences. Use this section to aid your research – share protocols and tips, and troubleshoot your experimental techniques.
BHD Research Blog
A rolling commentary of all things BHD from someone in the field. The blog welcomes comments, but users will not be able to add a new post to the BHD Research blog.