Much useful information for patients with Birt-Hogg-Dubé syndrome can be found on the BHD Foundation website www.bhdsyndrome.org . The BHD Foundation and its supporting organisation Myrovlytis Trust were inactive from 2017 until recently February 2021, when Dr Anna Webb was appointed as the new Charity Manager.
Support for BHD today can be found with the VHL UK/Ireland Facebook Group and the International Birt Hogg Dube Syndrome Group
Copied from the start of page https://www.bhdsyndrome.org/for-families/what-is-bhd/
Birt-Hogg-Dubé syndrome (also known as BHD) is a hereditary condition named after the three Canadian doctors that first described it in 1977 – Arthur R. Birt, Georgina R. Hogg, and William J. Dubé.
At first, BHD was thought to be a skin condition after skin lesions were found on the faces and necks of several members of an extended family. It is now known that BHD can also cause lung cysts, collapsed lungs, and kidney cancer. BHD mainly affects adults, with symptoms usually appearing in a person’s 20s and 30s.
