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:
- Raise awareness and improve diagnosis of BHD.
- Collect data on the clinical manifestations and natural history of BHD families with the aim of improving screening and prevention strategies in BHD.
- Facilitate laboratory research to improve understanding of BHD syndrome.
- Establish and maintain a FLCN mutation database.
- To work towards clinical trials of potential novel therapies.
EBC mission:
- Improve understanding of BHD syndrome.
- Improve prevention, screening and treatment of BHD syndrome.
- Raise awareness of BHD syndrome with relevant groups of doctors.
- Create a database of patient and family data.