BHD Foundation
@BHD_Foundation
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Your resource for Birt-Hogg-Dubé Syndrome: research and support. Managed by @myrovlytis #RareDisease #Pneumothorax #KidneyCancer #BHDSyndrome
Joined June 2011
Watch Katie's video to learn more about why we are raising funds and how you can help us. Share amongst your friends, family and colleagues to help raise awareness and support the BHD Foundation . Donate ❤️
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@gofundme thank you for creating a platform that allows us to raise funds for this vital charity supporting people with rare diseases😊.
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It is with great sadness that we announce the passing of our founder Dimitris. This is a major loss to the communities we support as the Trust goes through the process of voluntary liquidation. Visit to find out more about our future and about Dimitris
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Massive congratulations to Professor Stefan Marciniak and his team for this project @Prof_Marciniak.
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🧬 New research funded by @myrovlytis uncovers how many people may carry genetic variations linked to BHD. 🔎 In this special blog for #NationalDNADay, we break down the findings and explain what it means for the patient community. Read it here:
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Sending best wishes for a Happy Easter from all at the BHD Foundation. Our offices will be closed on Friday 18 and Monday 21 April 2025. You can find out more about BHD by visiting our website
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Want to learn more about BHD and the skin? Join us for an online event with Dr Joyce Teng, a renowned expert in dermatology from Stanford University in the USA. The event is online on 29 May 2025 at 18:00-19:00 GMT (UK time). Secure your spot today:
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After experiencing lung collapses, Emil found answers through genetic testing - leading to a BHD diagnosis. Watch our interview with Emil to find out his story:
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Research into kidney cancer can help save lives. @myrovlytis funds research projects & one current project is investigating a treatment for kidney cancer. Learn more here: You can bring us closer to new treatments. Donate today 👉
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Dan started to experience pain on the right side of his body, and later found out he has kidney tumours. This led to his BHD diagnosis. In this video interview, we talk to Dan about his BHD journey 👉 . #kidneyCancerAwarenessMonth
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It's Kidney Cancer Awareness Month. @myrovlytis is driving progress in BHD and kidney health, but we need your help to keep research going. 💙 Help us fund the future of treatment and hope. Donate today ➡️
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Nominations for the 2025 @RareDiseases Rare Impact Awards are now open!. These awards honor individuals and organisations making significant stride in the rare disease community. Nominate your rare disease hero today 👉
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🔬 In today's blog, we take a look at some of our research into BHD. Professor Mark Lowdell received research funding from @myrovlytis to look into natural killer cells and kidney cancer in BHD. Read more about this research project 👉 #WorldKidneyDay
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#WorldKidneyDay is here. Kidney cancer can be a complication of BHD for some people. To spread awareness, we want to share this article. It talks about the symptoms and different types of kidney cancer. Check it out:
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We are asking clinicians and researchers to complete a short survey to help us better understand how many BHD patients and families there are across the world. Visit to complete the survey. Feel free to share amongst colleagues. Thank you!
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Today is International Women's Day. We recognise some of the amazing women who have impacted those with BHD including patients, researchers, clinicians, and staff. Thank you for being outstanding in your field. It is an honour to be part of your journey @womensday
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The Cambridge University Student Respiratory Society and LifeArc are hosting a symposium on the 12 March to discuss rare respiratory diseases. The aim of the conference is to highlight these diseases to medical students. Zoom Meeting #PhD #RareDisease
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On #RareDiseaseDay, we want more people to learn about #BHD. A spontaneous pneumothorax can be a sign of BHD. Genetic testing can help people get the answers they need. Want to learn more about BHD and its symptoms? Head over to our website:
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Living with a rare condition can take a toll on mental health - but you're not alone. Support is out there. 💜. Rare Mind's wellbeing hub includes resources to help you live as well as possible with your rare condition. Check it out here: #RareDiseaseDay
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