The first BHD Foundation Patient Advisory Board (PAB) meeting was held on Tuesday 3rd May 2022. The aim of this was to discuss the needs of the community and future directions for the Myrovlytis Trust and BHD Foundation. This report highlights the major topics of discussion and outcomes.
1. Awareness
Raising awareness of BHD is a core value of the BHD Foundation and is also extremely important to the PAB. As an international charity, we are thrilled that our PAB is made up of people from the UK, mainland Europe and the US. This enables us to gain insights into different healthcare systems so we can increase our platform for awareness. We discussed the different types of doctors we should be targeting and strategies to reach out to them.
We have recently created a leaflet aimed at raising awareness of BHD among healthcare professionals. We are in the process of sending this leaflet to different doctors and identifying the best approaches to use. One of these approaches is to distribute the leaflet at relevant professional conferences. It may even be possible to attend the conference to give a presentation or a poster about BHD. The PAB suggested we could contact national professional organisations for different types of doctors and include our leaflet or information about BHD in their newsletters. We thought this was a great idea and are creating a list of relevant organisations to contact.
Members of the PAB also mentioned that whenever they go to a hospital appointment, they take information with them about BHD. They give this information to their doctors to help raise awareness of the condition. We have created several BHD information leaflets that can be used for this purpose. If possible, we would encourage you to do the same thing. The more people we have raising awareness of BHD, the more people we will reach. Find our information leaflets here.
2. Resources
The biggest resource we have is the BHD Foundation website. Last year, we updated the content of the website to ensure the information was as up to date as possible. Now, we want to make the content as accessible and visually stimulating as possible, using a more modern website design. We are looking forward to starting work on this project with support and input from the PAB.
We were also keen to identify topics that the BHD community would like more information or guidance on. The PAB discussed the uncertainty many people with BHD have about the risks of flying. We agree this is a common concern and will be looking into developing a resource to answer this, and other lifestyle questions, about BHD.
Another topic of discussion at the meeting was regarding health insurance and BHD. As an international charity, this is difficult as every country has a different healthcare system. However, we realise a large proportion of our community are based in the US and so we will be seeking advice on the best way to discuss this topic. Over time we aim to expand our information to cover different healthcare systems.
3. Events
We have recently announced our BHD Symposium this year will be aimed at the BHD community. The event will be held online on Saturday 8th October, 3 pm – 8 pm UK time (10 am – 3 pm EST). Tickets are free and available now by registering here. We are thrilled to have members of the PAB involved in organising this event. We asked the PAB if there was a particular topic about BHD they would like to be featured. As BHD has such a range of symptoms, it wasn’t surprising that everyone had different thoughts! We will take this into consideration and look forward to creating a diverse programme of events.
4. Research
Through the Myrovlytis Trust (who manage the BHD Foundation), we have funded over £7 million into BHD research over the past 15 years. We are committed to funding BHD research until there are new treatments or even a cure for the condition. One of our main missions is to unite researchers, clinicians and people with BHD. It is important to us that the research we fund is in the best interest of the BHD community. We are delighted that our next round of funding will give our PAB the chance to review grant applications.
We are also extremely pleased to have recently launched the BHD Syndrome International Registry (BIRT). We believe that the registry is an important step towards finding new treatments or a cure for BHD. It is also a chance for the community to contribute to research so we can find out more about the condition. One of our major goals is the creation of standardised diagnostic and management guidelines. These will improve the quality of life of people with BHD through early diagnosis and improved management of their condition. Find out more and sign up to the registry here.
We would like to thank the PAB members for their time and thoughtful input at this meeting. The BHD Foundation and Myrovlytis Trust work to raise awareness and fund research to improve the quality of life of those with BHD. We are delighted to have established the PAB to ensure that the voices of people with BHD are being heard. We are proud to be able to amplify these voices and are committed to advocating for the community to empower people with BHD.