Have Your Say: Research into Sickle Cell, Welfare and Future Genomics Priorities 

The Sickle Cell Society has launched two important research projects exploring the experiences and priorities of people living with sickle cell disorder – and they are inviting members of the community to share their views.

The first project focuses on understanding how people with sickle cell disorder experience the welfare system, particularly in relation to Personal Independence Payment (PIP). The Society is asking anyone who has applied for PIP, whether successfully or not, to complete a short survey to help inform future recommendations and advocacy work. The survey is open until Friday 31 October.

In a separate initiative, the Sickle Cell Society is working with Genomics England and the James Lind Alliance to help shape the future of research into sickle cell and genomics. People affected by sickle cell are invited to share what research priorities matter most to them by completing a short survey by Tuesday 14 October. Participants will also have the chance to enter a prize draw to win a £150 Amazon voucher.

Our Ethnicity and Health Unit works closely with communities and partners to improve understanding of health inequalities, including through research on sickle cell care and lived experience. At NIHR ARC Northwest London, we are proud to highlight these opportunities for people living with sickle cell disorder to help shape future research, policy, and support services.

You can take part in the surveys below: