Finding a Doctor

As Birt-Hogg-Dubé syndrome is rare, it can be difficult to find a doctor who has seen multiple cases and it is preferable to find a BHD specialist for your treatment. There are BHD specialists located around the world, for example Dr W Marston Linehan and team at the NIH in Bethesda, MD, USA; Professor Eamonn Maher in Cambridge, UK; and Professor Kuniaki Seyama in Tokyo, Japan. You can e-mail contact@bhdsyndrome.org for help finding your nearest specialist.

The VHL Alliance is working with its clinical care centres, shown on the map (red pins), to ensure that they can also provide the necessary kidney care for people with BHD. In addition there are centres of pulmonary excellence in the United States (blue pins) that were originally set up as centres of excellence for LAM but also specialise in the lung symptoms of BHD. Additional individual centres with expertise in BHD are shown on the map as green pins.

The contact information on the map includes a contact name, primary phone number, and email address.

Please note that the map does not indicate the exact location; please call the contact number for a clinic’s address and directions.

If it is not possible to see a specialist, you should find a doctor who is willing to look at the literature, perhaps speak to other doctors, and to learn about Birt-Hogg-Dubé syndrome with you. It is especially important to establish a follow up plan for monitoring your kidney health once you have a BHD diagnosis due to the increased risk of developing kidney tumours.

Please do email us at contact@BHDSyndrome.org if you have any further questions or concerns.