A quick recap
Last month, we focused on collaboration, networking and the sharing of our preliminary findings. We previously mentioned our abstract submission to the Annual Sickle Cell and Thalassaemia (ASCAT) conference. We are pleased to announce that our abstract on ‘Research disparities in sickle cell disease, cystic fibrosis and haemophilia in the UK’ has been accepted for an oral presentation at the ASCAT conference in October 2024.
What have we been up to this month?
This month, we are excited to showcase our efforts in patient engagement and sharing of our work during key events including World Sickle Cell Day and the Imperial Great Exhibition Road Festival.
UK Public & Patient Involvement (PPI)
Rutendo volunteered the Imperial College Great Exhibition Road Festival on Saturday 15th June with the Invisible Warrior project to raise awareness of sickle cell disease. She used this opportunity to discuss her current work on the NHS RHO-funded project.
She had a great time speaking to the public and learning about the great work other sickle cell researchers are working on at the College.
On Saturday 29th June, Fred used a local event of the Congenital Anaemia Network (CAN) to meet with people with sickle cell disease and to discuss about their live experiences and their awareness of the National Haemoglobinopathy Register. The poster on display, entitled “Your health, your data, your views”, was co-created with a couple of people with sickle cell disease whose input was incredibly valuable! Fred had engaged conversations with teenagers, parents, haematologists, … which were all very informative.
Global World Sickle Cell Day
Wednesday 19th June was World Sickle Cell Day.
To commemorate this event, Rutendo attended an Open Day event at Hammersmith Hospital hosted by the Imperial Sickle Cell Group to raise awareness on activities in health, research and advocacy in sickle cell disease within the Imperial College, Imperial healthcare NHS trust and beyond. Rutendo presented her sickle cell comparative research and listened to talks on exciting work and developments in sickle cell including from Dr Steven Okoli, consultant haematologist and co-founder of the Imperial Sickle Cell Group, Natasha Gordon-Douglas, lead mentor at the Sickle Cell Society and Ganesh Sathyamoorthy, deputy director of the Ethnicity and Health Unit.
Meanwhile, Fred participated in the first International Conference Sickle Cell Disease in Lusophone Countries in Lisbon, Portugal. His presentation focused on the global burden of sickle cell disease and the recommendations of the Lancet Haematology Commission on Sickle Cell Disease. The Conference had representatives from the World Health Organization, the European Hematology Association (EHA), ERN-EuroBloodNet, patient advocates, governmental authorities, health ministries, and healthcare professionals from Angola, Brazil, Cape Verde, Guinea-Bissau, Mozambique, Portugal, and Sao Tome & Principe. The need for reliable epidemiological data was one of the key take-home messages from this meeting.
Workshops & Online Survey
The James Lind Alliance and Genomics England are conducting a project in collaboration with the UK Sickle Cell Society on research priorities in genomics for sickle cell disease. Fred is involved in this project as an Information Scientist, alongside patient representatives and healthcare professionals. The team is organizing a series of workshops in person and online for young adults, adults, families and healthcare professionals. The first workshop will be held in London for adults (over 30s) on Tuesday 9th July. Participants can register using the following link.
Finally, EuroBloodNet, in partnership with the Lancet Haematology Commission on Sickle Cell Disease and ASCAT, is conducting a global survey of people with sickle cell disease to find out about their priorities in relation to research, education and policy. The survey was launched on the 19th of June and is available through the QR code or via this link.
