This section provides information about obtaining and understanding an accurate diagnosis of BHD syndrome, knowing your treatment options, and forthcoming BHD-related clinical trials.

Do I have BHD?

Provides an initial set of questions to consider if you suspect you have BHD syndrome.

Finding a Doctor

Offers a starting point if you do not already have a suitable doctor.

Genetic Test

A definitive diagnosis can only be attained by having a genetic test.


Currently, treatments are only available for controlling the various symptoms of BHD syndrome and cannot cure or prevent the disease. Additionally, treatments are mainly surgical. For more detailed information, please look under the skin, lung and kidney tabs in this section.


Provides an introduction to clinical trials and information about trials open to BHD patients.


Do you have any experience regarding these topics, can you offer any advice on them, or would you like to know more? Why not post your advice or questions on our Forum?