The BHD Foundation

06/02/2026

The conference report for the 9th International BHD Symposium 2026 is available now.

Researchers, clinicians and patient advocates from around the world came together to share the latest developments in BHD research and care.

Key topics included:

🔬 Folliculin biology
🫁 Lung health and pneumothorax
🧬 Kidney cancer research
🩺 Clinical care and surveillance
🤝 Patient involvement and global collaboration

Read our summary and the full report to discover what these advances could mean for the BHD community.

👉 https://www.thebhdfoundation.org/blog/461-bhd-research-symposium-march-2026-conference-report

A massive thank you to all conference presenters,, attendees and post event report writers for making it such a wonderful event 💙

06/01/2026

Cancer52 have launched a new patient survey for people affected by rare and less common cancers. This includes kidney cancer experienced with Birt-Hogg-Dubé syndrome.

They want to hear about patients' experiences, challenges, and priorities so they can better support the rare cancer community.

You can complete the survey using the following link. Please share the survey with your patient communities and networks 🩵

👉 https://www.surveymonkey.com/r/c52patientsurvey

Every voice counts.

05/27/2026

We are so excited to be hosting our next Meet the Expert with Stefan Marciniak and Nishant Gupta. Both are leading experts in BHD and rare lung conditions, and we are honoured to have them sharing their knowledge and expertise with our community.

The BHD Foundation is managed by a group of BHD patients, making us entirely patient led. The event will be hosted by our very own Elizabeth.

The event is free to attend, with an optional donation to the BHD Foundation 💙

Book your space here https://www.eventbrite.com/e/bhd-foundation-meet-the-expert-june-2026-tickets-1989173409214?aff=oddtdtcreator

05/21/2026

The BHD Foundation is pleased to share a new pilot funding opportunity focused on advancing Birt-Hogg-Dubé (BHD) research, offered through a partnership between The Robert & Christina Silberman Charitable Trust and The LAM Foundation.

This initiative is intended to support innovative early-stage projects that can deepen understanding of BHD biology, improve clinical care, and accelerate progress toward meaningful therapeutic advances for patients and families affected by the disease.

The collaboration with The LAM Foundation reflects the growing recognition of important scientific and clinical overlap between BHD and LAM, including shared pulmonary manifestations and ongoing opportunities to improve recognition, diagnosis, and translational research across both diseases.

We are proud to help promote this opportunity within the BHD research community and encourage investigators pursuing novel, high-impact ideas to apply.

TIMELINE
All times listed are Eastern Time. Late submissions will not be accepted.

June 1, 2026: Letter of Intent (LOI) submission window opens
June 30, 2026, 5:00 PM ET: LOIs due
July 15, 2026: Applicants notified whether full proposals are invited
September 15, 2026, 5:00 PM ET: Full proposals due

LOIs are required. Please visithttps://www.thelamfoundation.org/wp-content/uploads/2026/05/BHD-call-for-proposals-5-1-2026.pdf to review the Call for Proposals and submission instructions for complete details.

Questions and submissions may be directed to: [email protected].

05/12/2026

We are delighted to announce tickets are now available for our next BHD Foundation Meet the Expert event focused on BHD and the lungs as part of World Pneumothorax Day taking place on that week.

Join Professor Stefan Marciniak from the University of Cambridge, UK, and Professor Nishant Gupta from the University of Cincinnati, USA, for an expert discussion on BHD, lung health and the latest research on the prevalence of BHD.

📅 29 June 2026 at 12:00 pm EDT
💻 Online via Zoom
🎟 Free event

Register here:
https://www.eventbrite.com/e/bhd-foundation-meet-the-expert-june-2026-tickets-1989173409214

Please share with anyone affected by BHD 💙

05/10/2026

All BHD Foundation events are listed on our Eventbrite page.

Follow us there to stay updated on upcoming Meet the Expert sessions, patient events, webinars and community discussions.

👉https://www.eventbrite.com/o/the-bhd-foundation-121343144529

We look forward to connecting with you 💙

04/30/2026

04/28/2026

📣 US BHD Community — Research Participants Needed

Researchers are collecting facial photographs (selfies) to help improve earlier detection of Birt-Hogg-Dubé Syndrome and understand how it changes over time.

You may be eligible if you are:
• 18 or older
• Diagnosed with BHD
• Living in the US

If you would like to take part, please use the QR code on the flyer or sign up here:
https://redcap.stanford.edu/surveys/?s=KM4XEYA8HEN7LWJ3

Dr. Alphie Yip at Stanford University has confirmed they have recieved a very encouraging response so far, but more participants are still needed.

Please consider participating or sharing to help support this promising research. Thank you.

04/14/2026

We have published our latest Meet the Expert conference report from March 2026.

This session featured Professor Nathanson, who shared valuable insights into the genetics of Birt-Hogg-Dubé (BHD), diagnosis, and how the condition is managed.

The report brings together the key takeaways in a clear and accessible way for patients, families, and the wider community.

👉 Read the full report here: https://www.thebhdfoundation.org/blog/459-meet-the-expert-march-2026

Thank you to everyone who joined us and to our speaker for sharing her expertise and supporting the BHD community 💙

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