The BHD Foundation was formed in 2011. The idea was formed from the joint work between the Birt-Hogg-Dubé Family Alliance and the Myrovlytis Trust.
We are confident of a future where people are aware of BHD, new therapies will be available, and a cure will be found. We want to make rare well known.
Our mission is...
To support, inform and connect the BHD community worldwide.
Our vision is…
To support the community at each stage from genetic testing to managing symptoms. We will achieve this by providing information and resources about BHD to people with BHD, their families and healthcare workers.
We foster the relationship between patients, clinicians, and researchers to build a strong community. We do this by hosting events, running campaigns and funding research through the Myrovlytis Trust.
We look at the future to better understand BHD. We do this by funding the BHD Syndrome International Registry (BIRT). The registry is a patient-reported registry and includes information on the diagnosis, symptoms, and management of BHD.
Who are the Myrovlytis Trust?
The Myrovlytis Trust was founded in 2007 to promote research and raise awareness of rare conditions.
The Myrovlytis Trust is the BHD Foundations 'umbrella' charity. All grants and projects are financed by the Myrovlytis Trust funds. The trust oversees charity governance and compliance.
The trust allows us to spread our wings and support a range of rare conditions from one charity. We have a great staff team who have the skills and knowledge, to ensure that all causes we support are treated equally.
We are strong in our opinion that we support conditions that have clear, unmet needs. Conditions that are often overlooked and underfunded in favour of more ‘common’ health conditions.
It was clear that the BHD community would benefit from our support through enhanced patient advocacy and funding of new BHD research. We are the only charity that supports people with BHD across the world.