At the end of 2022, we sent out a survey to the BHD community about our work at the BHD Foundation. We wanted to make sure you had a say in the projects that we prioritise in 2023. In this blog, we summarise some of the common themes and ideas highlighted by the survey and how we are addressing them.
Connecting with Others
You said:
- You would be interested in meeting other people with BHD.
- You would be interested in face-to-face conferences.
- You enjoy the Meet the Expert sessions and are most interested in hearing from lung and kidney experts and BHD researchers.
- You would like a list of BHD specialists in different countries.
We did:
- We direct all new BHD patients to the BHD patient led Facebook group where they can share experiences, ask for advice and connect with others.
- We have confirmed a date for the 2023 BHD Research Symposium. This year’s event will be aimed at clinicians and researchers. We also encourage patients to attend as an opportunity to learn more about the latest research. The symposium will be hosted both in person and online. More details about this will be announced soon.
- We have confirmed a date for the first Meet the Expert Session of 2023. On Wednesday 1st February we will be joined by Lisa Henske. She will be talking about her research into BHD and lung cysts. Register now.
- We have an interactive map where you can search for BHD experts. We have also added an option to download a list of BHD experts in different countries.
We are planning:
- To explore creating a ‘virtual coffee’ morning. These virtual meetings will be a platform where people with BHD can meet and share their experiences. If you are interested in helping with these sessions get in touch with us at contact@bhdsyndrome.org.
- To host a dedicated patient conference every other year following the success of the BHD Community Symposium in 2022. This will include opportunities to connect with researchers, clinicians and other people with BHD.
Medical Records and Research
You said:
- You would like to hear more about current research.
- You would like to be involved with research.
- You would like to see more research in the following areas:
- non-kidney cancers
- genetics
- skin
- You said that research reports are not always accessible to people who do not have research backgrounds.
- You would like information on the difference between cysts and tumours.
- You would like all your medical records to be in one place.
We did:
- We have a weekly blog post. We blog about the majority of new BHD research that is published.
- We launched the BHD Syndrome International Registry (BIRT) which will help to advance research into BHD. Anyone with a BHD diagnosis can take part and contribute to research.
- We established the first BHD patient advisory board. This year they will be involved in reviewing grant applications to ensure the research we fund is relevant and impactful for people with BHD.
- We are currently funding several research projects into different aspects of BHD. This includes a project looking at BHD genetics and a project looking at the skin. We are in regular contact with our grant holders and will keep you up to date with these research projects.
- We are PIF TICK accredited and complete a yearly assessment. This means that we have processes in place to ensure that any new resources we make are accessible to people with non-research backgrounds. This includes involving members of the BHD community (patients and experts) throughout the development and testing of new resources.
We are planning:
- To announce our 2022 grant holders very soon so you can find out more about our newly funded research.
- To explore how best to support people to get involved with research.
- To soon announce our 2023 research funding call.
- To redesign the BHD website and include information on a range of topics based on your feedback. For example, the difference between tumours and cysts. If you have anything you’d like to see on the new website let us know at contact@bhdsyndrome.org.
- To explore different platforms where you can upload medical records.
BHD Syndrome International Registry (BIRT)
You said:
- You would like to know where you can find information about BIRT.
- You would like to share the link to the BHD registry.
- You have concerns about sharing personal information in the BHD registry.
- You would like the registry to be available in multiple languages.
- You would like more information on how to navigate BIRT and how the data is used for research.
We did:
- Information about the BHD registry can be found on the BHD Foundation website. We will be updating the BHD Foundation website this year and will ensure that the registry is clearly signposted.
- Link to information about the registry: https://bhdsyndrome.org/for-families/bhd-syndrome-international-registry/
- We are very happy for you to share links to the registry.
- Link to the registry: https://birt.healthie.net/register
- The Pulse Infoframe platform follows rigorous, international regulatory data standards and ensures the highest data security and privacy.
- The registry will soon be available in French, German and Spanish.
We are planning:
- To write a FAQ on BIRT that will address all your questions. The blog will be published in February. Until then please contact us at contact@bhdsyndrome.org with any questions.
Awareness
You said:
- It can be challenging to talk to family members about BHD.
- We need to raise awareness of BHD among doctors.
We did:
- We have a letter that you can give to family members that explains what BHD is and information about genetic testing.
- We created a BHD symptom leaflet for doctors.
- We are preparing for Rare Disease Day 2023 and World Pneumothorax Day 2023. These days will help to raise awareness of BHD.
We are planning:
- To present and exhibit at conferences to raise awareness of BHD among doctors.
We will continue to review the feedback as the year progresses and update you on our progress. Thank you to everyone who took part in the survey. We wish you all a wonderful start to the new year.