About us

About The BHD Foundation

The BHD Foundation was formed in 2011, following the joint work of the Birt-Hogg-Dubé Family Alliance and the Myrovlytis Trust, with the shared aim of improving understanding, support, and outcomes for people affected by Birt-Hogg-Dubé syndrome (BHD).

In 2025, following the closure of the Myrovlytis Trust, the Foundation entered a new chapter. The BHD Foundation was taken forward by a group of patients with lived experience of BHD, ensuring continuity of support for the global community and safeguarding the progress made over more than a decade.

Today, the Foundation is entirely patient-led. Its directors are individuals and families affected by BHD, many across multiple generations, who bring not only lived experience but also deep professional expertise across the financial, health, and not-for-profit sectors. This combination of personal understanding and professional knowledge underpins everything we do.

We are confident in a future where BHD is widely recognised, effective therapies are available, and one day, a cure is found. We believe rare conditions deserve attention, investment, and momentum. We are here to make rare well known.

We are proud to be the only charity dedicated to supporting people with BHD worldwide, ensuring that lived experience sits at the heart of everything we do.

Our Mission

To support, inform, and connect the global BHD community.

Our Vision

To support individuals and families affected by BHD at every stage of their journey, from genetic testing through diagnosis and long-term management.

We achieve this by providing trusted information and resources for people living with BHD, their families, and healthcare professionals. We foster strong relationships between patients, clinicians, and researchers, building a collaborative and informed community. This includes hosting educational events, leading awareness campaigns, and supporting research.

Looking to the future, we are committed to advancing understanding of BHD through data-driven research. A central part of this work is the BHD Syndrome International Registry (BIRT), a patient-reported registry that collects vital information on diagnosis, symptoms, and management. BIRT plays a crucial role in shaping research priorities, improving care, and driving progress.