Sickle Cell Alliance formed to accelerate innovation and investment in research
Imperial College Healthcare NHS Trust and Imperial College London have co-launched a new partnership, the Sickle Cell Alliance, to improve the lives of patients with sickle cell disease through education, diversity, innovation and inclusivity.
The Alliance combines the expertise of clinicians, researchers, educators and patient advocates to enhance research, funding, and patient support for the global sickle cell community. Building on the existing work of the Imperial College Sickle Cell Group, the Alliance draws on the Trust’s clinical expertise and provides a platform for translational research to address unmet clinical need.
The Alliance is spearheaded by Dr Steven Okoli, consultant in red cell haematology at Imperial College Healthcare, and Professor Julie Makani, visiting professor at Imperial College London and principal investigator of the sickle cell programme at Muhimbili University of Health and Allied Sciences in Tanzania.
Reflecting on the launch, Dr Steven Okoli said: “The Alliance marks a significant step forward to improving outcomes for sickle cell patients in north west London and beyond. Collaboration in sickle cell research and care is crucial for overcoming funding limitations, bridging knowledge gaps, and accelerating the development of life-changing treatments.”
The Alliance will also provide industry engagement on a larger-scale. This is in line with the Trust’s vision for Paddington Life Sciences, which aims to support NHS-industry partnerships and create a thriving ecosystem for life sciences research and innovation in north west London.
The north west London need
Sickle cell disease is the most common genetic blood condition in the UK, affecting approximately 17,500 people. As an ethnically diverse community, north west London has a particularly high incidence of patients, with over 600 adult patients with sickle cell disease at Imperial College Healthcare and approximately 2000 further patients within the West London Haemoglobinopathy Coordinating Centre’s region.
People with sickle cell disease do not make haemoglobin properly - this is the substance in red blood cells, which helps them to carry oxygen around the body. Patients with sickle cell can experience excruciatingly painful episodes in any part of their body, organ damage and early death but treatment options are still very limited. Sickle cell disease predominantly affects those who have an African and Caribbean family background.
Patient voice is key
The launch of the Alliance was marked with an event hosted at Scale Space at Imperial’s White City Campus and attended by leaders in sickle cell research and care, patient representatives and advocates. The event highlighted the role of patient engagement and opportunities to build trust with sickle cell advocates and patients through creative mediums such as art.
Laurel, a graphic designer and sickle cell patient, spoke on how she has used art to express her own experiences with sickle cell: “The Alliance launch event was an incredible day and I was proud to be a patient representative using my voice and art at the Sickle Cell Alliance launch event. Working with an amazing team of professionals towards the same goal is incredibly important and so vitally needed for the future of the sickle cell community.”
The Sickle Cell Alliance stakeholders are:
Imperial College London, Imperial College Healthcare NHS Trust, North West London Patient and Public Voice, Paddington Life Sciences, Heme Health, Sickle Cell Society, Embassy of Tanzania, West London Public and Patient Voice, Richard Coker Foundation, The Venus Bushfire, Medic4rare Diseases, Thalassemia UK, Guy's and St Thomas' NHS Foundation Trust, University of York, Sickle Charta, King's College Hospital NHS Foundation Trust, University College London NHS Trust, Emory University, UK Thalassemia Society, African and Caribbean Leukemia Trust.
