Driving research, providing support and improving outcomes for rare disease patients and their families

The Myrovlytis Trust is delighted to launch their new Birt-Hogg-Dubé Syndrome (BHD) Explainer Video. BHD is a rare genetic condition that causes fibrofolliculomas (benign skin lesions), lung cysts, pneumothoraces and kidney cancer. 600 families have been diagnosed worldwide with BHD, although it is expected that more people may have it but are unaware. As BHD is rare clinicians have not often heard of it and it takes a long time for a patient to be diagnosed.

 

This video discusses what BHD is, how it is diagnosed and the importance of screening for kidney cancer. We hope that it proves useful for everyone in the BHD community, from those who are newly diagnosed to clinicians who are learning about it. Watch it now. 

A transcript of the video is available here.