As emerging gene therapies offer new hope for people living with sickle cell, international leaders, expert clinicians, researchers, policymakers and patient advocates will gather at Camden Town Hall, London on Friday 19 June for Voices of Resilience, a World Sickle Cell Day hybrid event focused on awareness, research, advocacy and action.
Convened by The Richard Coker Foundation in partnership with Painless Universal, Sickle Cell Alliance, Sickle Cell Society in tandem supported by both the West London Haemoglobinopathy Coordinating Centre and The First Lady of Kwara State, Nigeria; the collaborative event comes at a critical moment for the global sickle cell community. Sickle-cell disease is a genetic disorder that affects haemoglobin, the molecule in red blood cells responsible for carrying oxygen, whilst on the flipside the sickle cell trait provides a natural protection against severe malaria.
Held under the theme “Raising Awareness. Inspiring Change. Saving Lives”, the programme welcomes representatives from healthcare institutions, government agencies, charities, research organisations and patient groups working across the UK, Africa, the Caribbean and beyond.
The event’s keynote address will be delivered by Her Excellency Ambassador Professor Olufolake Abdulrazaq, First Lady of Kwara State and Chairperson of the Nigeria Governors Spouses Forum, Nigeria, who says, “In commemoration of this years’ World Sickle Cell Day, it is my resolve to continue advocacies with Ajike People Support Centre and our partners, to stop the stigma attached to sickle cell while sustaining efforts to stem the disease, advocate for world class healthcare and intensify research for better treatment that will give those affected by this disease a better quality of life.”
Highlights in Science, Research and Living Well Panel will be hosted d by leading clinicians and researchers, including Dr Steven Okoli of Imperial College Healthcare NHS Trust and Professor Julie Makani, Principal Investigator, Sickle Cell Programme, Haematology and Blood Transfusion, Muhimbili University of Health and Allied Sciences (MUHAS) Tanzania, with discussions on emerging gene therapies and advances in clinical care, patient advocacy and lived-experience sessions hosted by Zainab Garba-Sani of the Sickle Cell Society, and presentations from others exploring community health, nutrition, wellbeing and international collaboration.
Lady Anne Welsh, Founder of Painless Universal and Sickle Cell Warrior, said:
“As someone living with sickle cell disease, this mission is deeply personal to me. I know the pain, the challenges and the silent battles that many warriors face every single day, but I also know the power of hope, resilience, community and access to the right care….
Through Painless Universal, I am passionate about creating platforms like Voices of Resilience because every sickle cell warrior deserves to feel seen, heard and supported. This event is not just about awareness; it is about action bringing together patients, doctors, researchers, policymakers and communities to improve lives and create lasting change.
Sickle cell disease touches millions of lives across the world. When we work together, we can transform lives, strengthen communities and build a brighter, healthier future for everyone affected by sickle cell disease.”
Baba-Jallah Epega, Trustee, speaking on behalf of the guest of honour Dame Julie Coker; pioneering broadcaster, media personality and Chair, both from The Richard Coker Foundation said:
“Awareness creates hope, research saves lives and blood donation makes treatment possible. Through Voices of Resilience, we want to inspire more people to learn about sickle cell, encourage more patients to participate in clinical research, and motivate more blood donors to come forward and support those living with all blood conditions every day.”
The Voices of Resilience hybrid programme on World Sickle Cell Day will serve as a platform for meaningful dialogue, knowledge exchange and partnership-building across borders and generations, demonstrating the strength of collaboration, focused action groups and the power of lived experience in shaping the future of sickle cell care.
