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Sickle Cell Society UK

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Sickle Cell Society UK

The Sickle Cell Society was first set up as a registered charity in 1979. It was formed by a group o

The Sickle Cell Society is a registered charity that supports and represents people affected by sickle cell disease to improve their overall quality of life.

17/02/2026

📢 Our Welfare & Benefits Support Service launches today – 17 February

We’re pleased to launch our new Welfare & Benefits Support Service in partnership with Citizens Advice, offering free, personalised advice for people living with sickle cell across North East London and Essex.

The service provides support with benefits checks and applications (including PIP and Universal Credit), help with forms, appeals and evidence, financial guidance, housing and employment advice, and tailored one-to-one support for individuals and families.

To book an appointment or self-refer, please contact the team directly by phone or email, or scan the QR code to get started.

📞 020 3855 5234
📧 sicklecell@eastendcab.org.uk
📍 Appointments are available one day per week at Citizens Advice Tower Hamlets and 1.5 days per week at Mile End Hospital.

Support starts today — please share with anyone who may benefit.

12/02/2026

💗 As we approach Valentine’s Day, let’s talk.

Our latest episode of The Sickle Cell Society Podcast is now live — exploring screening, pregnancy planning, and NHS testing for sickle cell and thalassaemia. With Valentine’s weekend almost here and many thinking about love and relationships, it’s the perfect time to open up these important conversations.

Hosted by Kesewaa Browne, this episode features Iyamide Thomas (Sickle Cell Society) alongside an incredible panel:
Gabriel Theophanous (UK Thalassaemia Society),
Amanda Hogan (NHS England Antenatal and Newborn Screening Team),
Nkechi Anyanwu (Community Matron for sickle cell and thalassaemia services in Southeast London),
Oddy Cooper (Vice Chair, UK Thalassaemia Society and parent of a child with thalassaemia), and Fumi Foster (Sickle Cell Patient).

🎧 Listen on Spotify, Apple Podcasts, YouTube (audio & video), or via our website:
https://www.sicklecellsociety.org/the-sickle-cell-society-podcast/

If you’re able to, please follow the podcast and leave a quick rating or review — it really helps more people find the episode. And if you find it helpful, we’d love you to share it with others who might benefit.

10/02/2026

The HALO study, which explores long-term health, wellbeing and quality of life for people living with sickle cell, was recently highlighted in a BBC Yorkshire article — helping shine a light on the importance of lived experience research.
If you’ve been diagnosed with sickle cell and live in the North of England, you may receive an invitation to take part. By sharing your experiences, you’ll be helping shape better healthcare, education and support services for the future.
Read the full article here:
https://buff.ly/31r8M6h
Find out more about the study at buff.ly/JST2jrX

06/02/2026

📢 Last week to apply — get your applications in!
We’re hiring: Community Support Worker Lead📍 North East London

The Sickle Cell Society is recruiting a Community Support Worker Lead to oversee delivery of the North East London Home from Hospital project. The successful candidate will support patients and families living with sickle cell disorder, promote self-management, improve access to support services, and encourage appropriate use of clinical and emergency care.

📝 This is a paid opportunity to make a meaningful impact in the community.

📅 Closing Date: 11 February 2026
🗓️ Interview Date: To be confirmed

🔗 Full job description & how to apply — link in bio

05/02/2026

📢 We’re currently recruiting a new North West Programme Manager

After extending our Children & Young People’s Peer Mentoring Programme to Manchester, Liverpool and Sheffield a year ago, we’re now looking for a passionate Programme Manager to oversee delivery and continued success across the region.

This role will support young people with sickle cell through training, emotional support from mentors, and peer connection. Following the success of our London pilot, we’re proud to continue growing this programme beyond the capital.

Find out more and apply here:
https://buff.ly/joA8oIR

23/01/2026

📣 We need your voice!

Are you a young person aged 13–24 living with sickle cell, or a parent/carer of a young person with sickle cell? You’re invited to join a Sickle Cell Healthcare Transition Advisory Group, led by university researchers from Manchester and Nottingham in partnership with the Sickle Cell Society.

This group aims to better understand how culture and lived experience can shape the move from children’s to adult healthcare — and help improve transition services for young people with sickle cell.

✅ Share your experiences and help shape research
💷 Compensation for your time and expenses
📚 Training, skills development and reference letters
📄 Certificate recognising your contribution

To find out more, contact Dr Rachele Salvatelli: rachele.salvatelli@manchester.ac.uk

21/01/2026

Barts Health NHS Trust has published an official statement providing an update on the Same Day Emergency Care (SDEC) pilot for sickle cell patients at The Royal London Hospital.

We know many in the community have had questions and concerns following the petition to protect the service, and we encourage anyone affected to read the statement in full. While this update may provide reassurance for some, we recognise it may not take away the concerns many have shared about the experience of receiving care in general A&E settings. We will continue to listen to service users and monitor developments closely.

Read the update via our website here:
https://www.sicklecellsociety.org/royal-london-hospital-statement-update-on-sdec-pilot-for-sickle-cell-patients/

21/01/2026

In December 2025, our mentors treated our mentees to our annual half-term outing — and this year we enjoyed something truly special: Spider-Man in Concert 🕷️🎶

It was an unforgettable evening watching an incredible film brought to life by a talented live orchestra ✨ The atmosphere was powerful, inspiring, and for many of our mentees (and our team!), it genuinely felt like a once-in-a-lifetime experience.

To top it off, we even had the chance to meet some Spider-Verse Spider-Men in real life 🕸️🦸🏾 — a moment our young people won’t forget anytime soon!

A huge thank you to the Hammersmith Apollo for being so welcoming and accommodating, and for helping us make the night feel so magical 🌟

20/01/2026

Living with sickle cell in the North East? Your voice matters.

If you’ve been diagnosed with a sickle cell disorder and live in the North East of England, you may receive an invitation to take part in the HALO (Haematology Lived Experience and Outcomes) Survey.

The HALO study aims to better understand long-term health, wellbeing and quality of life, using lived experience to help shape improved healthcare, education and support services in the region.

By taking part, you’ll be helping researchers understand what truly matters to people living with sickle cell in the North East and inform future care and policy.

Find out more at buff.ly/8BMckPP

19/01/2026

We welcome the decision from the Scottish Medicines Consortium (SMC) to recommend the CRISPR gene therapy exa-cel (exagamglogene autotemcel), also known as Casgevy, as a treatment for people with severe sickle cell disorder in Scotland.

Historically, the only curative treatment available in Scotland was a donor stem cell transplant, however not all patients have a matching donor. This decision means Casgevy could provide a ‘functional cure’ for those unable to have a stem cell transplant, offering the chance to regain quality of life.

Following this news, we plan to hold a series of webinars to discuss all things gene therapy, including what it could mean for people living with sickle cell.

For more information and to submit your expression of interest for our upcoming gene therapy webinars, please see the link below:
https://www.sicklecellsociety.org/gene-therapy-update-smc-scottish-medicines-consortium-decision/

16/01/2026

We’re pleased to share Legacies of Sickle Cell, taking place at the Wellcome Collection on 24 January 2026.

This special event explores the history, impact and lived experiences of sickle cell, and highlights the importance of preserving our stories through archives and collections. We’re also looking forward to hearing from guest speakers, including Alinta Sara and Laurel Brumant-Palmer, who will be sharing their perspectives as part of the programme.

📍 Wellcome Collection, London (Reading Room 2)
🗓️ 24 January 2026 1:00pm – 2:00pm
♿ The venue is fully accessible

For more information, tickets, and details on how to access the Wellcome Collection’s Sickle Cell Society archive, follow the links below:
https://buff.ly/pFG3Nko
https://buff.ly/iQSahLJ

15/01/2026

📢 We’re now hiring again: Community Support Worker Lead (Deadline extended)
📍 North East London

The Sickle Cell Society is recruiting a Community Support Worker Lead to oversee the delivery of the North East London Home from Hospital project. The successful candidate will support patients and families living with sickle cell disorder, promote self-management, improve access to support services, and encourage appropriate use of clinical and emergency care.

📝 This is a paid opportunity to make a meaningful impact in the community.

📅 Closing Date: 11th February 2026
🗓️ Interview Date: To be confirmed

🔗 Full job description & how to apply:
https://buff.ly/EG3LNJj

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54 Station Road
London
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Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Website

http://www.sicklecellsociety.org/

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