Sickle Cell Society UK

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.

A huge thank you to T**i and the entire Hope for Sickle Cell team for inviting our Family Retreat Coordinator, Samantha,...
25/11/2025

A huge thank you to T**i and the entire Hope for Sickle Cell team for inviting our Family Retreat Coordinator, Samantha, to your Autumn Gala. It was a pleasure to join you all for an evening of connection, community, and meaningful networking.

We’re also incredibly grateful for the funds raised in support of the Sickle Cell Society — your generosity truly makes a difference. ❤️🩸

We are excited to announce that our CEO John James will be speaking at the Policy Projects Genomics Conference this wee...
25/11/2025

We are excited to announce that our CEO John James will be speaking at the Policy Projects Genomics Conference this week!
The 4th Annual PPP Genomics conference will focus on how genomics research can be used as a driver of economic growth - and how we can achieve this equitably in healthcare settings worldwide.
Join in-person or online by registering here👉 https://buff.ly/furyPXG

Last chance! Tell Us About Your Experience of Applying for PIP (Personal Independence Payment)We want to hear from you.I...
24/11/2025

Last chance! Tell Us About Your Experience of Applying for PIP (Personal Independence Payment)

We want to hear from you.

If you have applied for Personal Independence Payment (PIP) because of the impact of sickle cell disorder on your life — or the life of a dependant — we’d like to hear about your experience.

We’re interested in all stories, whether positive, negative, or mixed, and even if your application was unsuccessful. Your feedback will help us highlight the realities of applying for PIP while living with sickle cell.

🗓️ Complete the survey by 28th November:
🔗 https://buff.ly/AZAYg2U

Join us for Let’s Talk Sickle Cell: Walking the Journey Together — a supportive online session for parents and carers.Th...
20/11/2025

Join us for Let’s Talk Sickle Cell: Walking the Journey Together — a supportive online session for parents and carers.

This session offers a safe space to learn practical tips, ask questions, and connect with other families navigating sickle cell. Together, we’ll build community, share experiences, and support one another.

🗓️ Saturday 29th November
⏰ 10:30 AM – 12:00 PM
📍 Zoom

Scan the QR code on the poster to secure your spot.

We were delighted that our CEO, John James OBE, joined Baker McKenzie as part of their Black History Month celebrations....
19/11/2025

We were delighted that our CEO, John James OBE, joined Baker McKenzie as part of their Black History Month celebrations.
Baker McKenzie proudly supports and advocates for the Sickle Cell Society, hosting an insightful session with John to raise awareness of Sickle Cell Disorder (SCD) and Sickle Cell Trait (SCT).
With this year’s theme, “Standing Firm in Power and Pride,” the event championed the vital work we do locally and nationally to support the sickle cell community.
A huge thank you to Baker McKenzie for hosting us and helping raise awareness through this impactful event.

We are inviting young people with Sickle Cell living in North-East London to participate in a co-creation group, helping...
18/11/2025

We are inviting young people with Sickle Cell living in North-East London to participate in a co-creation group, helping us design ‘prototype’ resources (such as app, websites, videos, leaflets etc.) informing patients and families about the transition from children’s to adult’s services.

What would help make the transition process easier? What resources do you wish you had during your transition, and think patients should have now? We want to learn these things from you, and get creative!

Our first meeting is on Saturday 22nd November 1-3pm at Stratford Library (in-person), with follow-up sessions online. If you are interested, please sign up via the link bit.ly/co-creationgroup or scan the QR code.

📢 Deadline ExtendedJoin the Sickle Cell Society as our new Assistant Finance Officer (part-time, 14 hours per week).We’r...
17/11/2025

📢 Deadline Extended

Join the Sickle Cell Society as our new Assistant Finance Officer (part-time, 14 hours per week).

We’re looking for a detail-oriented and motivated individual to support our Finance & Administrative Manager in maintaining accurate financial operations and contributing to our mission of supporting people living with sickle cell.

📅 Closing date: 12th December 2025
🗓️ Interviews: TBD (in person)

Apply now and help make a difference.
📧 applications@sicklecellsociety.org

🔗 More info linked in our bio

🧬 Now Published: The Top 10 Research Priorities for Sickle Cell & GenomicsWe’re proud to announce that the Top Ten prior...
14/11/2025

🧬 Now Published: The Top 10 Research Priorities for Sickle Cell & Genomics

We’re proud to announce that the Top Ten priorities for future research into sickle cell and genomics have now been published — a milestone moment shaped directly by the sickle cell community.

This is the first project of its kind to explore sickle cell research priorities specifically through the lens of genomics — helping scientists understand the condition more deeply and guide the development of future treatments.

The list was created in partnership with Genomics England and the James Lind Alliance, with hundreds of patients, carers, carriers, and healthcare professionals sharing their lived experiences to shape what matters most.

These priorities will now help researchers and funders focus on the areas with the greatest potential to improve treatment, care, and quality of life — from personalised medicine to complications, pain management, and the genetics behind crises.

You can now read the full list online and learn more about how the sickle cell community shaped the future of research.

🔗 https://www.sicklecellsociety.org/sickle-cell-community-shapes-the-future-of-research/

Extended Deadline !🩸 Tell Us About Your Experience of Applying for PIP (Personal Independence Payment)We want to hear fr...
10/11/2025

Extended Deadline !🩸 Tell Us About Your Experience of Applying for PIP (Personal Independence Payment)

We want to hear from you.

If you have applied for Personal Independence Payment (PIP) because of the impact of sickle cell disorder on your life — or the life of a dependant — we’d like to hear about your experience.

We’re interested in all stories, whether positive, negative, or mixed, and even if your application was unsuccessful. Your feedback will help us highlight the realities of applying for PIP while living with sickle cell.

🗓️ Complete the survey by 28th November:
🔗 https://tinyurl.com/bdhzdmfz

✨ Trustees’ Week 2025 ✨This week, we’re celebrating our incredible Board of Trustees — a dedicated group of leaders who ...
07/11/2025

✨ Trustees’ Week 2025 ✨

This week, we’re celebrating our incredible Board of Trustees — a dedicated group of leaders who volunteer their time, experience, and passion to help shape the future of the Sickle Cell Society.

Their backgrounds span healthcare, finance, and more, bringing a wide range of expertise that helps ensure our work is strong, accountable, and centred on the needs of the sickle cell community.

We’re grateful not only for the skills they bring, but for the heart, energy, and commitment they show in every meeting and decision. They truly care about making things better.

We look forward to growing this fantastic team further in the new year — but today, we simply say thank you.

✨ Meet Your Mentors – Manchester Edition ✨Our mentoring programme continues to grow and flourish — because life is a lit...
30/10/2025

✨ Meet Your Mentors – Manchester Edition ✨

Our mentoring programme continues to grow and flourish — because life is a little brighter when you know you’re not fighting alone. 💪

Next up, meet three of our amazing Manchester mentors! Each of them brings their own experiences, insight, and compassion to help support young people living with sickle cell.

This Black History Month, we’re celebrating the power of community — reminding one another that we’re stronger together and never alone.

Whether you’re in school, at university, or starting your career, our mentors are here to guide, support, and listen as you navigate life with sickle cell.

If you’re aged 10–24, you can find out more about joining the programme and connecting with mentors like these via email or scanning the QR code.

📧 Email: NWMentors@sicklecellsociety.org

Our thoughts and prayers are with the people of Jamaica, who are waking to devastation today following Hurricane Melissa...
29/10/2025

Our thoughts and prayers are with the people of Jamaica, who are waking to devastation today following Hurricane Melissa. 💔

We also keep Cuba in our thoughts as the hurricane continues its path of destruction across the region.

Many in the Jamaican diaspora are part of the sickle cell community and our own Sickle Cell Society team — we’re all hoping that islanders and their loved ones are safe.

To find out how you can help and support those affected, please visit for more details.

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54 Station Road
London
NW104UA

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

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