FL Patient Engagement

From our Clinical Operations Lead, Dr Julie Dodds

The people living with FL are central to everything we do.

The Foundation will link research and clinical communities, together with patients, to help ensure their views and experiences are part of the development process for new treatments.

2021 was a busy year at the FLF as patient involvement continued to grow. March saw the set-up of the FLF super supporters group, a group working in partnership with the FLF, driven by FL patients to provide insight and input into FL research. Group members also act as champions for research in their own communities.

Patient and public involvement (PPI)

March also saw the FLF run a workshop with a leading expert in patient and public involvement (PPI) in health research for the super supporters group, on how patients can influence research. Patients were left inspired and motivated to be involved in FL research.

In June, FL patients engaged in brainstorming sessions with Caroline Lane, our Head of Marketing and Communications, to discuss marketing ideas for the FLF.

In September, we asked FL patients via social media to share their views on themes for research goals, as well as other topics important to them. A prominent topic shared by patients was the potential to find a cure in their lifetime -there is huge ambition to accelerate the research process to find curative treatments, and patients very much want to be a part of that journey.

November saw several patient

Our reach has continued to grow, as November saw several patient teams established for the FLF match campaign, with one patient raising over £83K from 1,160 donors.

Patients continue to be at the heart of everything we do, and we look forward to continuing to strengthen our partnership with them.

If you’re interested in getting involved, please email us at info@theflf.org