Find a Specialist
We know the journey to identifying BHD is not always easy. And finding a specialist can be challenging. We are here to help you find the support you need wherever you are in the world.
We have built up a database of specialists from across the globe who have knowledge of BHD. You can search for a specialist in genetic counselling, kidney, lung, or skin. Simply select your country and area of expertise on our interactive map. Please contact us if there is not a specialist listed near you.
We work with the LAM Foundation and VHL Alliance. The LAM Foundation supports a condition called Lymphangioleiomyomatosis which affects the lungs. The VHL Alliance supports a condition called Von Hippel-Lindau which affects the kidneys. It is often the case that a LAM or VHL specialist will also have knowledge of BHD. Both organisations hold clinics across the world. Visit their website to find a clinic near you.
We rely on patient feedback and our own interaction with the medical and science community to build a network of specialists. We would love to hear from you if you are under the care of a specialist not listed on our map and would like to share this information.
Markus Porsch
Otto-von-Guericke-Universität Magdeburg
Universitätsplatz 2
Magdeburg
39106
GermanyMarston Linehan
National Institute of Health
9000 Rockville Pike
Washington
20892
United States of America
MarylandMary Anne Morgan
University of Rochester Medical Center
601 Elmwood Ave
Rochester
14642
United States of America
New YorkMary Dunn and Tracy Rose
Von Hippel-Lindau Comprehensive Clinical Care Center
101 Manning Drive
Chapel Hill
NC 27514
United States of America
North CarolinaMaryl Kreider
Hospital of the University of Pennsylvania
838 Gates Building Philadelphia
Philadelphia
19104
United States of America
PennsylvaniaMasahiro Yao
Yokohama University
79-1 Tokiwadai
Yokohama
Kanagawa
240-8501
JapanMasashi Akiyama
Nagoya University Hospital
Tsurumaicha
Nagoya Showa Ward
Aichi
466-0065
JapanMasatoshi Kurihara
Tamagawa Hospital
Seta 4-chome 8 - 1
Setagaya City
Tokyo
158-0095
JapanMassimiliano Scalvenzi
Centro Unico Prenotazioni (CUP) Azienda Ospedaliera Universitaria Federico II
5 Via Sergio Pansini
Napoli
80138
ItalyMatthew Drake
Oregon Health and Science University
3181 SW Sam Jackson Park Rd
Portland
97239
United States of America
OregonMatthew Koslow
National Jewish Health
1400 Jackson Street
Denver
80206
United States of America
ColoradoMaurice Van Steensel
Skin Research Institute of Singapore
17 Mandalay Road
Singapore
308232
Singapore