Aims

The EBC’s aims are driven by its ambition to raise awareness of, improve diagnosis of, and facilitate laboratory research into, Birt-Hogg-Dubé syndrome.

The EBC aims to:

  1. Raise awareness and improve diagnosis of BHD.
  2. Collect data on the clinical manifestations and natural history of BHD families with the aim of improving screening and prevention strategies in BHD.
  3. Facilitate laboratory research to improve understanding of BHD syndrome.
  4. Establish and maintain a FLCN mutation database.
  5. To work towards clinical trials of potential novel therapies.

EBC mission:

  1. Improve understanding of BHD syndrome.
  2. Improve prevention, screening and treatment of BHD syndrome.
  3. Raise awareness of BHD syndrome with relevant groups of doctors.
  4. Create a database of patient and family data.