Help Us Make Work Fair for People with Sickle Cell
On World Sickle Cell Day, we called on everyone to Tell It Loud — and... Read More
About the RHO Transition Project
RHO Blog 1: April 2025 Welcome to this new blog, where we will share updates... Read More
Sickle Cell Patients Face Unequal Care: New Report Highlights
New Report Reveals Stark Inequalities in Sickle Cell Care On World Sickle Cell Day 2025,... Read More
Tell it Loud – Konnor Ewudzi shares for World Sickle Cell Day 2025
Konnor Ewudzi and Family Share Their Story for World Sickle Cell Day On World Sickle... Read More
North East London Wellness Events
NE London Holistic Wellness Events for Sickle Cell Warriors & Carers Join us monthly to... Read More
World Sickle Cell Day 2025
Thursday 19th June is World Sickle Cell Day, a United Nations’ recognised day to raise... Read More
New Report : Sickle Cell Patients’ Experiences of the London Ambulance Service
UNDER EMBARGO UNTIL 00.01 22 APRIL 2025 New Report Reveals Urgent Improvements Needed in Ambulance... Read More
Apply Now! 2025 Sickle Cell Family Retreat
Applications are open and filling up fast for our 2025 family retreat. It will take place... Read More
FAQs : Gene Therapy Approved for sickle cell disorder
Casgevy on the NHS for treating sickle cell disorder, and FAQ update. 31 January 2025.... Read More
Welfare and Benefits Advisor role
Welfare and Benefits Advisor – North East London Haemoglobinopathy Coordinating Centre (NEL HCC) The Welfare... Read More
New Podcast Episode: Dating, Relationships, and Sickle Cell – Out Now
Love, Dating & Sickle Cell – The Conversation We Need to Have Dating and relationships... Read More
Exploring New Treatment Options for Severe Sickle Cell Disorder : The Redress Study
Exploring New Treatment Options for Severe Sickle Cell Disorder: The REDRESS study Living with... Read More
Get Winter Strong – getting your flu and COVID-19 vaccines
Ahead of the colder months, flu and COVID vaccines are offered to those at most... Read More
Events | News | Service Review
Hospital Feedback Sessions
We’re supporting a series of hospital reviews aimed at improving sickle cell services. The reviews,... Read More
Paid Vacancy : Prison Estate Training & Development Lead
Prison Estate Training & Development Lead (London) in Sickle Cell Disorders The work of... Read More
Statement on Pfizer’s withdrawal of new sickle cell treatment, Voxelotor (OXBRYTA®)
We are deeply shocked and extremely disappointed by Pfizer’s sudden decision to withdraw Voxelotor (OXBRYTA®)... Read More
The role of dietitians in sickle cell care
The role of dietitians in sickle cell care For this week’s nutrition focus in Sickle... Read More
Sickle Cell Society Impact Report 2023-2024
We are pleased to share our latest Impact Report, which highlights the work we have... Read More
Sickle Cell Awareness Month 2024
September is Sickle Cell Awareness Month, dedicated to raising awareness about sickle cell disorder (SCD)... Read More
Exa-cel Update
Details about today’s news on the gene therapy, Exa-cel/Casgevy, and it’s approval by NICE for... Read More
Parvo Virus and Sickle Cell Disorder
We’re hearing from doctors that they are seeing a lot of cases of people with... Read More
Events | News | Uncategorised
Summer events
We have a number of workshops and feedback sessions over the summer months. The upcoming... Read More
World Sickle Cell Day 2024
Wednesday 19th June is World Sickle Cell Day, a United Nations’ recognised day to raise... Read More
Have you experienced stroke? Share your experiences.
The University of the West of England (UWE) in Bristol, and Kingston University in London... Read More
We need your feedback on hospital services
If you use hospitals in Birmingham, Leicester, Nottingham or Southampton for your sickle cell care,... Read More
Voxelotor approved for treatment of sickle cell
We are relieved and delighted at today’s news that The National Institute for Health and... Read More
May Feedback Sessions – Birmingham Sickle Cell patients
If you use Birmingham City Hospital, or Birmingham Women and Children’s Hospital for your sickle... Read More
ACTION NEEDED : Your Voice Matters in the Decision on Exa-cel Gene Therapy
Exa-cel (CASGEVY), a new gene therapy for sickle cell disorder treatment, is currently under consideration... Read More
Participants needed for research
We are supporting the University of Nottingham in its call for participants in a study... Read More
Exa-Cel (Casgevy) Gene Therapy Update
Today the National Institute for Health and Care Excellence (NICE) announced their draft decision to... Read More
Keep Warm in the Cold Weather
Winter can be a tough time if you live with sickle cell. Being cold can... Read More
Crizanlizumab – end of NHS supply
Adakveo (Crizanlizumab) stock recall following end of UK marketing authorisation On January 10th 2024, the... Read More
Crizanlizumab statement. January 2024
At the Sickle Cell Society, we are all profoundly disappointed by the 10 January decision... Read More
End of year thanks to you all
Thank you from the Sickle Cell Society.
Sickle Cell Society overturn NICE rejection of sickle cell drug
Sickle Cell Society overturn NICE rejection of sickle cell drug The National Institute for Health... Read More
Report into Nursing Care for Sickle Cell Disorder
Following on from the care failures highlighted in our 2021 report, ‘No One’s Listening’, we... Read More
New sickle cell treatment approved
New treatment approved for Sickle Cell Disorder In an historic moment for the sickle cell... Read More
Give Blood for Sickle Cell Awareness Month
We’re supporting the NHS autumn campaign for people from black heritage communities to give blood... Read More
Blood Genotyping Webinar
Charities and patient support groups are invited to a webinar on the NHS genotyping programme... Read More
Paid Vacancies : Mentors
Mentor – Sickle Cell Children and Young Person’s Peer Mentoring Programme The Sickle Cell Society... Read More
Sickle Cell Society AGM 2023(Virtual)
About this event You are invited to the 44th Annual General Meeting (AGM) of the... Read More
Peer Mentoring Scheme extended across London!
Our successful children and young people’s peer to peer mentoring scheme, for 10-24 year olds... Read More
MBE Congratulations
It is with great delight that we extend our heartfelt congratulations to Dr Farrukh Shah,... Read More
Iron Overload in Sickle Cell Disease
On World Sickle Cell Day, we’re encouraging people to take action by donating blood. People... Read More
World Sickle Cell Day 2023
Monday 19th June is World Sickle Cell Day, a United Nation’s recognised day to raise... Read More
All you need to know about Gene Therapy and New Therapies for Sickle Cell Patient Education Day – 1st July
Join us for our Patient Education Day on Saturday the 1st July where we will... Read More
All you need to know about Gene Therapy and New Therapies for Sickle Cell
Join us for our free Patient Education Day on Saturday 1st July where we will... Read More
Free Service – get tested for sickle cell and thalassaemia in Cardiff 22 June 2023
We’re joining with the UK Thalassaemia Society in Cardiff to raise awareness about sickle cell... Read More
Rise Up for Sickle Cell 2
Rise Up For Sickle Cell Reverse Psychology London is partnering with the Sickle Cell Society... Read More
SCS response to European Medicines Agency (EMA) and Committee for Medicinal Products for Human Use (CHMP) updates on Crizanlizumab
This statement is an update to our previous statement on Crizanlizumab made on the 31/1/23.... Read More
CSL Vifor VIT-2763 Clinical Trial in SCD
Vision Serentiy are looking for Volunteers to join their Sickle Cell Study Research Programme of... Read More
Congratulations to our Patrons participating in the King’s Coronation!
The Sickle Cell Society are absolutely thrilled to have three of our amazing Patrons playing... Read More
Redress Study Launch Event – Saturday 20th May
The REDRESS Study Launch Event! “REDRESSing the balance of healthcare for patients with sickle cell”... Read More
It’s in our Genes
Here is the “It’s in our Genes” Service User Experiences and Feedback on the Communication of... Read More
Appropriateness in Access to Automated Red Blood Cell Exchange. Discussion forum for patients and clinicians to help improve access to care.
The Sickle Cell Society and the Haemoglobinopathy Coordination Centres (HCC’s) have recently distributed a survey... Read More
Sickle cell nursing workforce project: Overview and call for evidence
Introduction and background: One of the clear findings of the sickle cell care inquiry conducted... Read More
Code Red Awareness Campaign Shortlisted in the PM Society Awards
We are happy to share that recently the disease awareness campaign Code Red (www.switchuponsickle.co.uk) was... Read More
Announcing our 2023 Children’s Holiday
Every year for as long as we can remember, we’ve run a Children’s Holiday for... Read More
This Valentine’s Did You Find Your Type?
By Iyamide Thomas, NHS Engagement Lead (Screening), Sickle Cell Society UK We celebrated Valentine’s Day... Read More
New Trustee: Claudette Allerdyce
A warm welcome to our new Trustee Claudette Allerdyce. Claudette is a pharmacist, with a... Read More
Living with Sickle Cell or Beta Thallasaemia Trait Leaflet
This leaflet gives a summary of research findings for Health and Social Care Professionals regarding... Read More
Rare Disease Day 2023
Today we’re recognising rare Disease Day, working towards equity in social opportunity, healthcare & access... Read More
SCS response to European Medicines Agency (EMA) and Novartis updates on Crizlanlizumab
As many of you will know Crizanlizumab (Adakveo) was recommended as a new disease modifying... Read More
Keep Warm in the Cold Weather
Cold weather months are always a difficult time for people living with Sickle Cell. Being... Read More
Aliyah Gladying – Real Lives Blog
In my early twenties I was registered as disabled. This was during my constant hospital... Read More
One Year on from ‘No One’s Listening’ – the Sickle Cell & Thalassemia APPG report into Sickle Cell healthcare in the UK
On 15th November 2021 the Sickle Cell and Thalassemia All Party Parliamentary Group released a... Read More
John James OBE awarded Percy Lane Oliver Memorial Award 2022
We are thrilled to announce that our CEO John James OBE has been awarded the... Read More
An Interview with Anusjka Regis
Recently we spoke to Anusjka Regis – one of the first people with sickle cell... Read More
DEFRA Podcast
Our NHS Engagement Lead, Iyamide Thomas recently took part in a comprehensive podcast for DEFRA,... Read More
PERICLES (Prenatal Therapy for Sickle Cell Disease)
The Sickle Cell Society is working with King’s College on a project looking at people’s... Read More
A Statement re Blood Shortages in England
Wednesday 12 October 2022 Dear Sickle Cell Society Members and the wider Sickle Cell Community... Read More
Blood Health Campaign
We supported the Blood Health campaign that launched on Launch Date within the Guardian and... Read More
Events | Mentoring Blog | News
Mentor Programme Relaunch
Do you know or live with anyone between the ages of 10-24 who have Sickle... Read More
Do you or anyone you live with have Sickle Cell? Join us on Zoom for... Read More
News | Photos | Uncategorised
Her Majesty Queen Elizabeth II
All at the Sickle Cell Society are saddened to learn of the passing of Her... Read More
The Sickle Cell Society – ‘Emmanuel Amuta Poetry Award’ 2022
The Sickle Cell Society – ‘Emmanuel Amuta Poetry Award’ Are you a young person (between... Read More
UK Heatwave Guidance
HOT WEATHER AND SICKLE CELL: The weather temperatures expected for today and Tuesday of this... Read More
Sickle Cell Society’s response to Crizanlizumab (Adakveo), on an interim basis for use by NHS Scotland.
Sickle Cell Society’s response to the Scottish Medicines Consortium SMC Committee’s decision to accept Crizanlizumab... Read More
Sickle Cell & Thalassemia APPG holds Annual General Meeting in Parliament
Sickle Cell & Thalassemia APPG holds Annual General Meeting in Parliament on Wednesday 22nd July 2022.... Read More
Sickle Cell and Fatigue (FiSCD Study) – Get Involved
The FiSCD Study: Understanding Fatigue in children and young people with Sickle Cell Disease The... Read More
