Exa-cel Update
Details about today’s news on the gene therapy, Exa-cel/Casgevy, and it’s approval by NICE for... Read More
Mentoring team paid roles- North West and South Yorkshire
We have nine exciting and fulfilling new roles in the North West and South Yorkshire Sickle... Read More
Freelance Roles – Sickle Cell Family Retreat
Freelance Roles – Sickle Cell Family Retreat Freelance Roles Available: 1 x Volunteer Liaison and... 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
Inflatable 5K
Inflatable 5K Coventry Get ready to bounce your way through The World’s BIGGEST and most... Read More
Draycote Water Running Festival
Draycote Water Running Festival Experience the beauty of Draycote Water, a picturesque 240-hectare reservoir and... 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
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
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
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
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
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
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 & 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
Virtual Children’s Holiday 2022
This year we’re excited to be running our popular online “Virtual” Holiday again for kids... Read More
World Sickle Cell Day 2022
Sunday 19th June is World Sickle Cell Day, a United Nation’s recognised day to raise... Read More
Dr Kwaku ‘KOF’ Ohene- Frempong – our condolences
We are saddened to learn of the loss of Dr Kwaku ‘KOF’ Ohene- Frempong. We... Read More
New research reveals healthcare professionals are critical of health inequities in early diagnosis and treatment of sickle cell disorder
New research from Creation Healthcare reveals healthcare professionals are critical of health inequities and lack... Read More
New Chair of Trustees Announced
The Sickle Cell Society is excited to announce a new Chair of Trustees, Michele Salter.... Read More
Establishing a Cure – Logo Design Competition
*NOW CLOSED* Establishing a Cure – Logo Design Competition We are excited to announce an... Read More
Mrs Herma Falconer 1933-2022
We are sad to announce that Mrs Herma Falconer, who was part of the Sickle... Read More
More Black African people can now give blood following major change to blood donation rules
The Sickle Cell Society has teamed up with NHSBT and three other charities to promote... Read More
Events | Fundraising | News
Run for Sickle Cell
Are you passionate about running? Have you ever participated in a marathon or half-marathon? Do... Read More
Sickle Cell Society calls for substantial improvements following CQC report into North Middlesex University Hospital Trust
Sickle Cell Society calls for substantial improvements following CQC report into North Middlesex University Hospital... Read More
Crizanlizumab to be available from 1st February
New sickle cell treatment to become available from the 1st February 2022. Back in October... Read More
Sickle Cell and Fatigue (FiSCD Study)
The FiSCD Study: Understanding Fatigue in children and young people with Sickle Cell Disease The... Read More
Coronavirus (COVID-19) & Sickle Cell Disorder
Coronavirus (COVID-19) & Sickle Cell Disorder This page provides the latest information and guidance specifically... Read More
Mental Health at Christmas: Some Tips for Coping
Mental Health at Christmas A guest article by Rehab 4 Addiction Why people suffer from... Read More
Office Re-Opening
On Monday 29th November, we re-opened our office after the phase-one of our refurbishment. We... Read More
Statement on Dr Mischa Brozovic
Statement on Dr Mischa Brozovic The Sickle Cell Society were deeply saddened to hear of... Read More
Hallelujah Christmas Time (Christmas Single)
The B Positive Choir have released a fantastically festive Christmas single ‘Hallelujah Christmas Time’. B... Read More
Westminster Hall Debate
Treatment of Sickle Cell We were delighted that Rt Hon Pat McFadden MP (Chair of... Read More
Christmas Shopping
Christmas Shopping This Christmas, why not raise FREE donations to support our work when you... Read More
No One’s Listening – A Report
MPs call for urgent changes to sickle cell care after inquiry finds “serious failings” Report... Read More
Mid Term Strategy Update
In 2020 we issued a strategy describing how we would develop the Sickle Cell Society... Read More
Autumn Newsletter 2021
Autumn Newsletter 2021 In this Autumn edition of our newsletter, get an update on the... Read More
