Driving research, providing support and improving outcomes for patients and their families affected by rare conditions

The first BHD Community Symposium was held on October 8th, 2022. We were delighted to have over 200 people registered from 22 countries across 5 continents for this virtual event. This year’s symposium was the first deliberately designed to be accessible to all members of the community throughout the entire event. We were thrilled to welcome people with Birt-Hogg-Dubé syndrome (BHD) and their families alongside clinicians and researchers.

Connecting the community and ensuring the different members of the community were heard was an important part of this year’s symposium. We opened the symposium with a discussion between our CEO, Anna Webb, and the CEO of the LAM Foundation, Sue Sherman. They spoke about the shared challenges faced by communities in the rare disease space and the importance of the patient voice when tackling them.

…it’s the voices, as we know, of our communities that really are vital to the progress of both research as well as improving treatment from rare diseases.” Sue Sherman, LAM Foundation

They also spoke about the importance of global networks and forming partnerships, both within a single rare condition and more broadly within the rare disease space. We are proud to be partnered with the VHL Alliance, HLRCC Family Alliance and Driven To Cure to drive forward research into inherited kidney cancers. We look forward to creating similar partnerships identifying priority research areas across the rare cystic lung disease field. Please get in touch with us if you would like to discuss forming a partnership with us.

“Breakout session enabled me to “meet” other scientists I know from reading but not to talk with. Before the end of the conference, I was exchanging emails with one and may well ultimately do research with (just like after and in-person conference).” Feedback from BHD Community Symposium attendee

We held sessions featuring the latest BHD research, including an update from our 2021 grant holders. These sessions covered research into understanding BHD from a clinical perspective including information on the prevalence, diagnosis and treatment of BHD. Several talks also focused on uncovering the molecular pathways behind folliculin (FLCN, the gene mutated in BHD).

“The research talks were fascinating, highly informative and gives us all a lot of hope that significant advances are being made towards finding a cure and towards optimal management of BHD.”  Feedback from BHD Community Symposium attendee

Read our BHD Community Symposium Research report.

We also held a ‘Meet the Experts’ session which facilitated discussion around the symptoms of BHD. We had three ‘rooms’ dedicated to lung, skin and kidney symptoms. Each room had at least two BHD experts. They provided a platform where patients, researchers and doctors could talk about treating and monitoring the symptoms of BHD.  

“The chance to speak to experts – since my diagnosis 4 years ago I have tried to get answers to questions but have been given the wrong advice or no response. So thank you so much.” Feedback from BHD Community Symposium attendee

In the final session we heard directly from people with BHD who shared their lived experiences and thoughts on raising awareness.  Connecting all parts of the community is at the heart of the BHD Foundation and Myrovlytis Trust. There is so much we can learn from each other. Including and listening to the patient voice is important in understanding how to advance BHD research.

  “…there was comfort in participating with a community of individuals facing similar issues as myself. It definitely provided a level of ‘assurance’ that we are not alone in this!” Feedback from BHD Community Symposium attendee

“I am getting to see patient perspectives for the first time, and simultaneously saw great cutting-edge research results. This leaves me with a lot of hope that we will one day soon be able to treat all patients efficiently, successfully with minimal invasive procedures.” Feedback from BHD Community Symposium attendee

Read our BHD Community Symposium report on connecting the community.

We were delighted to be able to hold this event for the BHD community and receive overwhelmingly positive feedback. 100% of people surveyed found the symposium useful and learned something new. It was encouraging to hear this as there is so much we can learn from each other. We are proud to be part of this wonderful community working towards a shared goal.

Read our report on feedback from the BHD Community symposium.

“Perfect organisation, not easy to blend a public of patients, clinicians and researcher so well!”  Feedback from BHD Community Symposium attendee

In 2023, our symposium will be a hybrid event, taking place on 13th -14th of October in London, UK and online. Everyone will still be welcome to attend, however the 2023 symposium will be focused on BHD research. We hope that this will be an inspiring event that will unite the BHD research community, form new collaborations and drive forward research. Please sign up to our newsletter to receive updates about the symposium.