We value the experience of patients, family and carers
Patients are experts in their disease. By working with and learning from people who live with rare respiratory diseases, we can be confident that we’re prioritising the right challenges and proposing solutions that will have a positive, real-world impact for patients and their loved ones.
How are people with lived experience involved in the Centre?
Since the Centre was launched, our researchers and healthcare professionals have been working to build relationships with patients and patient-group representatives. They have been helping to shape and improve our work by sharing experiences, giving feedback on ideas and taking part in discussions.
As the Centre matures, we’re starting to build a UK-wide, online community of people with experience of rare lung conditions, including patients, family members and carers. That’s because we know that research works best when it’s guided by the people it aims to serve.
What does involvement look like?
If you’re a person with lived experience, there are lots of ways that you could get involved. For example, you could:
- Join a friendly discussion group to share your views and opinions about a research topic
- Review documents (such as a patient information leaflet) and share your thoughts on how they could be improved
- Work with a research team to design new projects and funding applications
- Raise awareness of rare respiratory conditions and related research
Your experience of living with a rare respiratory condition is valuable. You don’t need a background in science, medicine or research to take part in these activities – your lived experience is your expertise!
Who can take part?
The Centre focuses on three groups of rare respiratory conditions:
- Rare cystic lung diseases, such as Birt-Hogg-Dubé and Lymphangioleiomyomatosis (LAM)
- Rare interstitial lung diseases, including familial fibrosis and childhood interstitial lung diseases (chILD)
- Primary ciliary dyskinesia (PCD)
Anyone with experience of these conditions is welcome to join, including patients, family members, carers and those who have lost a loved one. We aim to be inclusive and we value and welcome people with diverse experiences and backgrounds. We encourage people who may not usually get involved in research to take part.
“Very few people have LAM, so we do our best to support each other. That sense of belonging and understanding is really valuable and I love the positivity it brings.”
Interested in taking part?
To learn more about what’s involved and upcoming opportunities to participate, use our contact form to get in touch with Issy, our Patient and Public Involvement and Engagement Manager. We want everyone to have a chance to be involved, so we may invite different people to different activities and sometimes we’ll look for people with specific experiences.
