The BHD Foundation

08/25/2026

🧬 **NEW BLOG: Birt-Hogg-Dubé Syndrome Clinical Trials**

We have brought together information on current and recent clinical trials and studies involving BHD, including opportunities for the BHD community to get involved.

👉 Read the new blog here: https://www.thebhdfoundation.org/blog/462-birt-hogg-dube-syndrome-clinical-trials

Please share with anyone who may find this useful 💙

07/15/2026

There’s still time to participate in this important research!

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.

07/08/2026

A huge thank you to everyone who joined us for our Meet the Expert Lung event.

An extra special thank you to our expert presenters for generously sharing their knowledge and expertise.

We are also so grateful to everyone who submitted questions and took part in the discussion. Your engagement helps make these events so valuable.

If you registered for the event, you will receive a recording within the next two weeks, so you can revisit the session or catch up if you could not attend live.

We would also love to hear your thoughts. Your feedback helps us improve future events, so if you have a few minutes, please complete our short survey:
https://us1.list-manage.com/survey?u=524485aaf374eae7786dcb2fa&id=9039278589&attribution=false

06/30/2026

🌍 Today is World Pneumothorax Day.

A pneumothorax (collapsed lung) is one of the most common symptoms of Birt-Hogg-Dubé (BHD) syndrome, affecting around 1 in 4 patients during their lifetime.

Knowing the signs could make a vital difference. Symptoms may include:

✅ Sudden chest pain
✅ Shortness of breath
✅ Difficulty breathing
✅ A feeling of tightness in the chest

If you experience these symptoms, seek medical advice promptly.

Help us raise awareness of BHD and pneumothorax this World Pneumothorax Day.

Find out more about symptoms and treatments for BHD https://www.thebhdfoundation.org/what-is-bhd/symptoms-treatments

06/24/2026

🎤 **Presenter Spotlight: Dr. Nishant Gupta**

We are delighted to welcome Dr. Nishant Gupta as one of our featured speakers for our Meet the Expert webinar.

Dr. Gupta is Professor of Clinical Medicine at the University of Cincinnati, Director of the Interstitial Lung Disease Program, and the LAM Foundation Endowed Professor for LAM Research. His internationally recognised work focuses on rare lung diseases, including BHD, where he has helped advance our understanding of the lung manifestations of the condition and improve patient care.

Don't miss this opportunity to hear directly from one of the world's leading experts and ask your questions during the live Q&A.

📅 Meet the Expert 29 June 2026

🎟 **Register your place here: https://www.eventbrite.co.uk/e/bhd-foundation-meet-the-expert-june-2026-tickets-1989173409214?aff=oddtdtcreator

06/18/2026

Today, on World Kidney Cancer Day, we are resharing the story of Scott and Michaela.

Scott is living with a rare form of kidney cancer caused by Birt-Hogg-Dubé (BHD) syndrome. In this powerful story, he shares the emotional burden of knowing that this genetic condition may be passed on to his children, and the impact that has had on him and his family.

By courageously sharing their experiences, Scott and Michaela are helping to raise awareness, break down barriers, and remind others affected by rare diseases that they are not facing this journey alone.

A huge thank you to Scott and Michaela for sharing their story and helping us reduce the isolation that so often comes with living with a rare condition.

Watch their story here:
https://vimeo.com/1142050480

You are not alone 💙

06/15/2026

Meet the Expert Speaker Spotlight: Professor Stefan Marciniak

Professor Stefan Marciniak is a world-leading respiratory physician and researcher at the University of Cambridge, UK, specialising in rare inherited lung diseases, including Birt-Hogg-Dubé syndrome and familial pneumothorax.

As co-lead of the new LifeArc Centre for Rare Respiratory Diseases, Professor Marciniak is helping bring together researchers, clinicians and patient organisations to accelerate the development of new diagnostics and treatments for rare lung conditions.

Join us to hear his latest insights into rare lung disease research and what they could mean for people living with BHD.

🎟️ Book your place: https://www.eventbrite.co.uk/e/bhd-foundation-meet-the-expert-june-2026-tickets-1989173409214

06/10/2026

World Kidney Cancer Day is on 18 June 2026.

The World Kidney Cancer Day Emotional Wellbeing Global Symposium will take place on 18 June 2026 at 2.00 pm - 3.00 pm CEST.

Find out more about this event and how to join by visiting https://www.worldkidneycancerday.org/ #:~:text=World%20Kidney%20Cancer%20Day%0AEmotional%20Wellbeing%20Global%20Symposium

Kidney Cancer and Emotional Wellbeing Kidney cancer doesn’t only affect your physical health, it also impacts emotional wellbeing in ways such as anxiety about scans, changing relationships, isolation and worries about what the future holds. Our 2025 Global Patient Survey revealed 85% of kidney ca...

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.