Are you living with lupus, scleroderma, myositis, or vasculitis?

Would you like to make a difference?

Can you spare some time to talk to us?

We are looking for patients and carers to join our research community. The RECORDER team is made up of researchers and healthcare professionals at the University of Nottingham and Nottingham University NHS Trust. Our studies aim to improve the health and care of people living with rare diseases. We are having a meeting to gather views to ensure our research is relevant to you:

Saturday 15^th June 2024 11.00-15:00 at Queens Medical Centre and online

11.00-11:30 Welcome, introductions and RECORDER update

11:30-12:15 Current research: sharing key messages from a study on the impacts of appearance and weight changes due to taking steroids.

12:15-13:00 Lunch (provided for in-person attendees)

13:00-13:45 Future research: shaping the agenda for new studies to benefit people with rare diseases

13:45-14:00 Break

14:00-14:45 Reaching out: exploring opportunities for public engagement

14:45-15:00 Closing reflections and evaluation

15:00-16:00 [An optional post-meeting complementary therapy session is to be confirmed]

These rare diseases affect all people regardless of background and culture. We particularly encourage those from ethnic minority backgrounds traditionally underrepresented in our research, so our work truly benefits everyone. Taking part will not affect your NHS care and we have a small budget to cover reasonable travel and care expenses if we know in advance.

Let us know if you’d like to attend or if you’d like more information:

Email: RECORDER@nottingham.ac.uk

Twitter: @RecorderUK