BHD Foundation
The BHD Foundation (UK Charity Commission number 1122073-1) was created in 2011 in collaboration with the Birt-Hogg-Dubé Family Alliance and the Myrovlytis Trust.
MissionThe BHD Foundation aims to support, inform and connect the BHD community worldwide.
VisionThe BHD Foundation supports the community at every stage from genetic testing to ongoing management. We achieve this by providing comprehensive information and resources for people with BHD, their families and healthcare providers.
We foster the relationship between patients, clinicians and researchers to build a strong and versatile community. This is managed through hosting events, running campaigns and funding research through the Myrovlytis Trust.
Together we will work towards a future with increased awareness of BHD, new therapies, and eventually a cure.
For all funding enquiries please visit the Myrovlytis Trust website
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Resources & Support
Patient Worthy Posts on BHD
Introducing the Newest Patient Worthy Partners
Patient Worthy makes a point to develop relationships with advocacy groups focused on rare diseases in order to help spread awareness, highlight patient experiences, and
Myrovlytis Trust and Patient Worthy are Now Partners!
The Myrovlytis Trust, a UK Charity focused on promoting research and advancing education for rare diseases, and Patient Worthy are now partners! This organization has
Three Partners Join Forces for a BHD Syndrome International Patient Registry
According to a story from the BHD Foundation, Patient Worthy partner The Myrovlytis Trust, along with the BHD Foundation and Pulse Infoframe, are collaborating on
World Pneumothorax Day 2023
June 30th is World Pneumothorax Day and this year we are urging all doctors to ask about family history if a patient presents with
A Rare Condition Disguised as BHD
NOTE: The article was originally published as a blog post from the BHD Foundation a nonprofit patient advocacy organization. Birt-Hogg-Dubé syndrome (BHD) is a rare
World Pneumothorax Day 2024: Spreading Rare Disease Awareness
June 24, 2024 is being recognized as World Pneumothorax Day, a time for spreading awareness about pneumothorax among the general public and in the medical
