Dear Applicant,
With approximately 18,500 people living with sickle cell and around 300 babies born with the condition every year, sickle cell is both the most common and fastest growing inherited blood disorders in the UK. Nevertheless, it remains one of the most persistently under-served. The Sickle Cell Society exists to change that, and we are looking for our next Chief Executive to lead us through one of the most consequential chapters in our history.
The Society was founded in 1979 by pioneers who refused to accept the healthcare system’s failure to properly treat and support people with sickle cell. In the decades since, powered by committed volunteers and donors, we have driven change across clinical care, and community support – including, most recently, spearheading the introduction of a national NHS sickle cell improvement programme. Alongside this advocacy, we run vital services that impact our communities’ lives such as a helpline, peer mentoring, and retreats for children and young people.
We have built real momentum, but systemic challenges persist. A 2025 report commissioned by the NHS Race and Health Observatory confirmed what our community has long known: sickle cell patients still receive markedly less specialist nursing provision, research funding, and treatment options than people with comparable conditions. Going forward, we strive to continue to address this gap and transform care for people living with sickle cell.
With our current Chief Executive, John James, planning to retire in 2027, we are seeking a visionary, high-performing leader ready to build on the strong foundations of this charity and help us amplify our impact. You will inherit an organisation with high (international) credibility and a fiercely loyal community of supporters. Your mandate will be to reimagine what is possible for people living with sickle cell in this country. We want a leader who will challenge us, bring their own bold thinking to the table, and help us close the gap the Race and Health Observatory report has laid bare.
If you believe you are the person to lead that change, we would love to hear from you.
Yours sincerely,
Dr Matthew Sowemimo
Chair of the Board of Trustees