Patient Information

NCL Community Engagement Event 2022

In June 2022, Dr Olu Wilkey (NMUH) and Dr Andrea Leigh (UCLH) successfully hosted an NCL community engagement event at Tottenham Hotspurs’ Stadium. The event was engaging, informative and well attended, with lots of input from healthcare professionals and charities. Watch the Q&A session with the Expert Panel.

New resource to mark World Sickle Cell Day 2023 - Anthony Nolan/Stem cell transplant

To mark World Sickle Cell Day 2023, Anthony Nolan have shared their brand-new resource for people with sickle cell disorder considering a stem cell transplant. Having a stem cell transplant has been a possible treatment option for adults with severe sickle cell disorder in the UK since 2020. As it is the only curative treatment option currently available, it’s likely patients will have questions whether this could be an option for them. Please visit Anthony Nolan's dedicated web page for sickle cell disorder.

Priapism

The Sickle Cell Society have released a useful video on Priapism and what to do if you experience it. To watch the video and for further information, please visit A Simple Guide to Priapism.

TRCN Patient Information Session on Research

The Red Cell Network held a Research Information session which was open to all Red Cell Patients who wanted to learn more about the research process. The session was a huge success and gave patients the opportunity to ask questions freely, and air any concerns they had about becoming engaged with research.

In the second part of the session Eliane Young, a psychologist from Addenbrooke's hospital in Cambridge, talked about a study which focuses on the psychology associated with getting older and living with Sickle Cell Disorder. It is the first of its kind in the UK, and will be open initially to patients in the East Anglia and North Central London region. View the full recording of the patient information session.

UCLH Patient Information Leaflets