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 who can be found by using the below map. Please also email firstname.lastname@example.org for help finding your nearest specialist.
The VHL Alliance is working with its clinical care centres 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 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.
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 if you are aware of a specialist in your area which we have not already listed.