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



We are delighted to announce the launch today of the BHD Syndrome International Registry (BIRT), in partnership with Pulse Infoframe.

We want to reach a stage where there are treatments and eventually a cure for BHD. We believe that the BIRT registry is the first step to reaching that goal.

With information from the BHD community, we aim to speed up research and gain new insights into BHD. Importantly, this is a chance for patients to drive forward research in the field.

We have created a leaflet that can be printed to share information about the BHD Syndrome International Registry with patients. Download it here.