Birt-Hogg-Dubé syndrome also called BHD is a rare genetic condition that may cause skin bumps, lung cysts, collapsed lungs and kidney cancer. Most people with BHD live normal lives. However, we know that being diagnosed with a rare condition can feel lonely and it can be hard to find information about it.
At the BHD Foundation, we provide advice on being diagnosed and living with BHD. Find out about the symptoms, hear from other people with BHD and take part in our events. You can also help us raise awareness of BHD. Together we can inform, empower, and connect the BHD community worldwide.
BHD Stories
BHD and Lung Cancer: New Family Case Reveals Rare FLCN Gene Mutation
A recently published case discovers a new rare FLCN gene mutation and highlights the importance of early diagnosis.
Help save the BHD Foundation
The BHD Foundation faces closure following the passing of its sole donor. Patients and advocates are stepping up to continue its vital mission through a new patient-led nonprofit. Help support us!
BHD International Registry
We want to reach a stage where there are treatments and eventually a cure for BHD. We believe that the BIRT registry is the first step to reaching that goal.
News
BHD Research Symposium March 2026 Conference Report
Discover the key updates from the 9th International BHD Symposium 2026, including advances in BHD research, kidney cancer studies, folliculin biology, clinical care, and global collaboration to improve outcomes for people living with Birt-Hogg-Dubé.
Meet the Expert March 2026
Conference report for a meet the expert event about birt hogg-dube and genetics held in march 2026
