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: lght.ly/lmg6i9 #RareDiseaseDay

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: lght.ly/hmma8bj

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 cam-ac-uk.zoom.us/j/81320570580... #PhD #RareDisease

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 Women's Day

To all our patients and families, and all the clinicians and researchers 🙏

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 mailchi.mp/thebhdfoundati… to complete the survey. Feel free to share amongst colleagues. Thank you!

#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: lght.ly/0c5d553

🔬 In today's blog, we take a look at some of our research into BHD. Professor Mark Lowdell received research funding from Myrovlytis Trust to look into natural killer cells and kidney cancer in BHD. Read more about this research project 👉 lght.ly/89lml2p #WorldKidneyDay

Nominations for the 2025 National Organization for Rare Disorders (NORD) 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 👉 lght.ly/jal30jl

It's Kidney Cancer Awareness Month. Myrovlytis Trust 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 ➡️ lght.ly/43a997b

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 👉 lght.ly/6eap1j7 #kidneyCancerAwarenessMonth

Research into kidney cancer can help save lives. Myrovlytis Trust funds research projects & one current project is investigating a treatment for kidney cancer. Learn more here: lght.ly/i4jphaj You can bring us closer to new treatments. Donate today 👉lght.ly/53m325j

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: lght.ly/nbl9aj9

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: lght.ly/ih57lca

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 lght.ly/d07h6la

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 lght.ly/dicpipl to find out more about our future and about Dimitris