As we put together a calendar of events for 2023, we reflect on our achievements from the last year. After the relaunch of the BHD Foundation in 2021, we were keen to drive the charity’s efforts to fund research and provide support for people with Birt-Hogg-Dubé syndrome (BHD) in 2022 and beyond. We are proud of what we achieved last year and would like to thank everyone who contributed to our work.
Here, we share our 2022 highlights.
We kickstarted 2022 with a ‘Meet the Expert’ event hosted by the BHD Foundation team. We shared our achievements from 2021 and set out our plans for 2022. We then held 2 further ‘Meet the Expert’ events. In April, Dr Ed Cowen (NIH, USA) shared his work on BHD and the skin. We also held a panel discussion in July on BHD, genetics and pre-implantation genetic testing/IVF.
Join us for our next Meet the Expert with Professor Lisa Henske on February 1st. Lisa will be talking about her work on BHD and lung cysts. Get your free ticket now.
Our biggest event of 2022 was the BHD Community Symposium. This symposium was the first deliberately designed to be accessible to all members of the community. We were thrilled to welcome people with BHD and their families alongside clinicians and researchers to further connect the community. We were delighted to have over 200 people registered from 22 countries across 5 continents for this virtual event. Read the research and patient-focused highlights.
Research and Conferences
One of our proudest achievements of 2022 was launching the BHD Syndrome International Registry (BIRT) at the end of March. We launched BIRT with the aim of driving forward research and giving people with BHD the opportunity to participate in research. We now have over 200 people registered and we look forward to this growing over the coming years. Read our 6 month registry update.
We took part in several conferences this year to raise awareness of BHD among researchers and clinicians. We developed a BHD awareness leaflet (a printable version is also available) that was shared on a virtual platform at the European Respiratory Society Congress and WONCA, the general practitioner conference. We were also delighted to be able to present our work on BIRT at the European Conference on Rare Diseases and the 4th International Conference on Rare Diseases.
We were also delighted to announce our grant holders from 2021 in February. We also held another grant funding round in 2022 and will be announcing our new grant holders very soon. Research is an integral part of our work at the Myrovlytis Trust and BHD Foundation. Advancing research into BHD is important so that we can better understand it and develop new treatments
Raising Awareness and Social Media
2022 was also a busy year for getting involved in social media and raising awareness of BHD to the wider community. In January, we took part in Medics 4 Rare Diseases ‘Mystery Monday’ which educates future doctors about rare diseases. We also took part in Rare Disease Day and led the World Pneumothorax Day campaign. We got to share personal stories of BHD on these days including Lea’s story ‘From Lung Collapse to Ironman’ and Joanna’s story ‘Married on a Mountain with a Collapsed Lung’. We look forward to taking part in these events in 2023 and sharing more of your inspiring stories.
We were thrilled to launch our fundraising programme this year. We held a Prize Draw this year and raised over £650 towards a new BHD Foundation website. There are several other ways you can get involved and we would love to hear your fundraising ideas!
We would like to say a huge heartfelt thanks to everyone who got involved with us in 2022 and can’t wait to continue building and supporting the BHD community in 2023 and beyond.