News
Do you want to stay up to date with the latest BHD news? This is the place to be!
Here we will let you know about the latest BHD research, events, and opportunities to get involved with our work.
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Closure of the Myrovlytis Trust
It is with great sadness we announce the closure of the Myrovlytis Trust.
Genetic link to pneumothorax: Estimating BHD rates using UK Biobank
In this special blog for National DNA Day 2025, we break down new research and explain what it means for the BHD patient community.
Dan's story
In our new video interview, we talk to Dan from Missouri, USA to learn about his BHD journey.
Myrovlytis Trust Research Spotlight: Professor Mark Lowdell
Professor Mark Lowdell, BHD Researcher at University College London received research funding from the Myrovlytis Trust to look into natural killer (NK) cells and kidney cancer in BHD.
Emil's story
In our video interview with Emil, he tells us how he felt when he received his BHD diagnosis, how BHD helped him quit smoking and more.
Zoe Ridgeway: My BHD Journey
For Rare Disease Day, we speak to Zoe Ridgeway who was diagnosed with BHD in 2013.
An insight into the work of PhD student, Diana Cooke
Diana’s research is in the field of health psychology and here she explains how it can be used to understand experiences of living with rare conditions.
BHD Community Symposium 2024
The BHD Community Symposium was held online on the 12 October 2024. Read all about it in this blog.
Conference Report: Global Genes Rare Advocacy Summit
Myrovlytis Trust and BHD Foundation’s Health Information and Engagement Manager attended this conference. In this report, we discuss the conference in more detail.
ERN-GENTURIS: Guidelines on BHD diagnosis, surveillance and management
The BHD Foundation is excited to announce the publishing of ERN's first definitive European clinical guidelines for diagnosis and management of BHD. Read more here.
Does the size of the tumour matter? Case study of kidney cancer & BHD
In this blog, we discuss a recent report detailing an interesting clinical case of a patient who was treated for a small tumour on her kidney.