News and Updates
News and Updates
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Read the full storyLaptops and Drinks - Black History Month Special
Laptops and Drinks was inspired by a group of professional black women coming together, wanting to share some of the honest conversations about life’s dilemmas and experiences. Growing up we…
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Read the full storySickle Cell Disease - The Final Frontier!
Even after more than 40 years of raising public awareness of sickle cell disease, extensive education and training of healthcare professionals and the development of specialist services, we’re still…
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Read the full storyGirl, 13, suffered so much pain from disease, she couldn't play sport or go on holiday
Neriya-May Hall has had her life transformed by the use of ultrasound to administer blood transfusions and is now much less likely to experience a sickle cell crisis. A 13-year-old girl who…
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Read the full storyTwo thirds of Londoners with sickle cell disease have a Universal Care Plan
Over 5,000 sickle cell patients in London now have a Universal Care Plan (UCP), helping to ensure they get the right care wherever they are in the Capital (16 September 2024). The UCP is an NHS…
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Read the full storyHere's what we can do for National Sickle Cell Awareness Month
This September, let's continue to make progress for the sickle cell community For the sickle cell disease community, September is an important time for advocacy and raising awareness, because it’s…
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Read the full storySickle Cell Inspired Art & Poetry Exhibition
Akanji Studio is hosting and art and poetry exhibition for Sickle Cell Awareness month throughout the month of September at Boxpark Shoreditch and Boxpark Croydon. The exhibition is inspired by the…
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Read the full storyHit Netflix Show Supacell is Raising Awareness of Sickle Cell Anaemia
Rapman’s sprawling sci-fi drama is strikingly performed, bracingly plotted and its characters are up there with prestige TV’s finest. It’s ingenious! The creator of a hit Netflix show about a group…
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Read the full storyPatient Voices Sickle Cell Anaemia
Sickle Cell Anaemia The second project in the Terrific Teens programme of work facilitated the creation of Patient Voices Reflective digital stories in which storytellers explored the experiences of…
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Read the full storyThe Sickle Cell Society Podcast
The Sickle Cell Society just launched the Sickle Cell Podcast! With episode, hosted by Kesewaa Browne and a panel of experts discuss transitioning from child to adult sickle cell services. Listen…
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Read the full storySickle Cell Society Archive: Sickle Cell Society SA/SCS
Over a number of years the Brent Sickle Cell & Thalassaemia Centre has been working with the Wellcome Collection Library to archive some of the historical materials amassed by the Centre since its…
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Read the full storyNHS rolls out ‘life-changing’ treatment for thousands with sickle cell disease
Thousands of patients with sickle cell disorder are to be offered a new “life-changing” treatment on the NHS from today (3 May), following the approval and roll-out of a new drug that could…
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Read the full storyExa-Cel (Casgevy) Gene Therapy Update
The National Institute for Health and Care Excellence (NICE) announced their draft decision to reject the CRISPR gene therapy, Exa-cel, as a treatment for sickle cell disorder. Exa-cel, also known…
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Read the full story'What's the worst that could happen?': Love in the sickle cell capital of the world
The prevalence of sickle cell disease is changing how Nigerians date, marry and plan their lives. And as genetic testing becomes more common, prospective parents across the world will face similar…
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Read the full storyAre You Moving Up to Adult Sickle Care
Calling young people with sickle cell & parents! Are you transitioning from paediatric to adult services? Share your experiences with us in London next week! Email communications@sicklecellsociety.
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Read the full storyImperial's Sickle Cell Research Group welcomes Sickle Cell Warriors
Researchers at Imperial hosted a visit for children living with Sickle Cell to tour Hammersmith Campus. The Imperial Sickle Cell Research Group within the Department of Immunology and Inflammation…
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Read the full storyPatients with blood disorders to get world-first NHS test
Sickle cell patient gets world-first NHS test A patient with sickle cell disorder says she is optimistic for the future after a new genetic test was launched. Stephanie George, 32, from London, was…
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Read the full storyStandards of the Clinical Care of the treatment of Children and Adults living with Thalassaemia in the UK
We are thrilled to announce the online publication of the much-anticipated "4th Edition of the Standards of the Clinical Care of the treatment of Children and Adults living with Thalassaemia in the…
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Read the full storyTackling the Enemy of Cold Weather with Sickle Cell Disease
As winter approaches, I make several adjustments to avoid a crisis On Sunday, Oct. 29, daylight saving time ended here in the U.K., meaning we set our clocks back one hour. In the week leading up to…
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Read the full storyRead 2023 Sickle Cell Nursing Care Report - The Between Life and Death
An investigation into specialist sickle cell nursing workforce shortages Following on from the care failures highlighted in our 2021 report, ‘No One’s Listening’, we have taken a deeper look at…
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Read the full storyPrescription Savings Campaign
This campaign aims to raise awareness of the two prescription money saving schemes available to patients: the Prescription Prepayment Certificate and the Low Income Scheme. The campaign is targeted…
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Read the full storyUK Medicines Regulator Approves World-first Gene-editing Treatment for Blood Disorders
Prof. Mark Layton from Clinical lead of the West London HCC: “The Medicines and Healthcare products Regulatory Agency (MHRA) approved the first gene editing treatment called Exa-cel for a clinical…
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Read the full storyScience to Health in Haematology on a Global Scale
Haematology, the study of blood and blood disorders, underpins health. Tanzania and UK have established experience and expertise in this field at institutional and national level, and have been at…
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Read the full storyExclusive: Trust listening to sickle cell patients to drive improvements
The chief executive of a trust, which made headlines when a patient died due to a lack of staff training in sickle cell disease, has made significant changes and wants to further raise the…
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Read the full storyI'm the UK's first sickle cell specialist nurse this is how I fought for better care
Dame Elizabeth Anionwu is a pioneering woman in the research field of sickle cell - we are highlighting her exceptional contribution as we celebrate Black History Month The UK's first sickle cell…
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Read the full storyPatient Public Voice Group Away Day
On Friday the 29th of September the Patient and Public voice group of the HCC held an away day with David Gilbert from InHealth Associates. The session was a great chance for the patients and HCC…
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Read the full storyNew Black Film Collective
We are looking for 20 sickle cell warriors aged 15-18 to take part in our year long media program. During the program, you will get the opportunity to create a social media campaign, create a short…
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Read the full storyPeer Mentoring Scheme Positions
Our successful children and young people’s peer to peer mentoring scheme, for 10-24 year olds in East London, has received funding to roll out across London. This is great news for young people…
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Read the full storyGene Therapy for SCD in Africa and the activities by the Global Gene Therapy Initiative
Please head over to our YouTube to watch our Educational Session that occurred on the 21st of April 2023 about Gene Therapy for Sickle Cell in Africa and the activities by the Global Gene Therapy…
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Read the full storySickle Cell Education Series Episode 3: Treatments, How are they meant to treat me?
Welcome to Episode 3 of our Sickle Cell Education Series, a comprehensive and engaging year-long course tailored for individuals with sickle cell disorder. Title: Treatments - Are they meant to…
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Read the full storyAppropriateness 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 to sickle cell patients to ask for views on the provision of Automated Red Blood…
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Read the full storyHealth Improves After Stem Cell Transplant, But Challenges Remain
Red blood cells are shown in a graphic. People with sickle cell disease (SCD) may see their physical, mental, and social health get better after a stem cell transplant, and this may help them pursue…
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Read the full storyTwo-thirds of Londoners who signed up to give blood have not yet donated, new figures show
Two-thirds of people in London who have signed up to give blood have not yet donated, new figures show. NHS Blood and Transplant is urging some 235,000 potential donors who registered as donors…
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Read the full storyCost of Living Crisis
The condition, which affects red blood cells, means people must keep warm to avoid painful flare-ups which can often lead to a hospital stay. One Birmingham family said they were staying in bed to…
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Read the full story"Hidden condition made me feel like I was on fire. Now I feel like I have wings"
"At times it feels as though you’d rather it all ended because you can’t endure the pain" A woman was suffering a hidden condition was so painful she once thought it might end her life. Diagnosed at…
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Read the full story
Cost of Living Crisis
The condition, which affects red blood cells, means people must keep warm to avoid painful flare-ups which can often lead to a hospital stay. One Birmingham family said they were staying in bed to…
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Read the full storyBack to Basics - Understanding Anaemia
Join Dr Rossby AWADZI alongside Dr Kofi Anie and Dr Layan Allawi. First session in the series: Back to Basics - Understanding Anaemia. This event will be taking place on December 19th from…
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Read the full storyTake Part in The West London HCC Survey
We would like to invite you, as a West London Sickle Cell patient or care giver, to participate in a survey on your experiences of care in hospitals. The survey is being undertaken by the West…
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Read the full storyStatement Regarding Blood Shortages in England
information for members – Blood Donations We understand how frightening the recent news from NHS Blood and Transplant regarding blood shortages in England will be for you and your family. However,…
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Read the full storySickle Cell Society: Charity of the Month
Sickle Cell Society is the only national charity in the UK which supports and represents people affected by Sickle Cell. Set up as a registered charity in 1979, the Society was formed by a group of…
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Read the full storyA Proclamation on National Sickle Cell Awareness Month 2022
President Biden has issued a proclamation in recognition of National Sickle Cell Awareness Month. Read the proclamation here. Sickle cell disease (SCD) presents grave health challenges for an…
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Read the full storyInsider Magazine recently published an article discussing the SCD journey of NY Jets running back Tevin Coleman and his wife, who both live with sicklecell trait and raise a daughter with sickle cell anemia. Read it here:
New York Jets running back Tevin Colemandidn't know that he carried sickle-cell disease until he was in college. That's when the rigorous training required for his professional-football career…
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Read the full storyUK Heatwave Guidance
HOT WEATHER AND SICKLE CELL: The weather temperatures expected for today and Tuesday of this week are such that the government has issued a nationwide health alert/emergency. As you probably know…
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Read the full storySickle cell: 'I want patients to know there is hope'
A woman who became one of the first people to have a stem cell transplant for sickle cell disease on the NHS says she wants others to know there is hope. Anusjka Regis-Etumnu, from Luton,…
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Read the full storyDid you catch St Georges Hospital colleagues on the news this week?
The BBC London News joined St Georges Hospital to talk all things Heatwave The BBC attended St Georges Hospital to discusses the impact the heat is having on the hospitals staff and patients. Then…
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Read the full storyHello sunshine, hello summer and hello all things sickle cell!
Check out 5 Things Doctors Get Wrong About Sickle cell Patient advocacy in healthcare settings is a top priority for us here at SC101. While we appreciate and acknowledge all healthcare providers,…
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Read the full storyCan You Tell It's Sickle Cell?
NHS England and NHS Improvement has launched a new Sickle Cell awareness campaign ahead of World Sickle Cell Day 2022. The campaign, which is part of a bigger drive to improve sickle cell care…
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Read the full storySickle cell: ‘The revolutionary gene-editing treatment that gave me new life’
Jimi Olaghere thought he would have to wait decades to be freed from his sickle cell disease - but now scientists have engineered his blood to overcome the disease which left him in constant pain.
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Read the full storyGreat Exhibition Road Festival
Join us for a weekend of free events for all ages in South Kensington to celebrate trailblazing ideas in science and the arts. About this event Explore the extraordinary This summer, explore the…
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Read the full storyExchange Transfusions Changed My Life
My name is Laurel Brumant- Palmer I am 58 years old, I was diagnosed with Sickle Cell Disease SS at the age of 3 years old. I am a Sickle Cell survivor. Living with sickle cell disease has been…
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How I'm Prioritizing My Health in The New Year
Happy New Year! It’s 2022, and my New Year’s resolution is the same as always: to experience and maintain good health. I’m not completely naive. I’m acutely aware of how sickle cell disease works,…
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Read the full story"Sickle Cell patients already face medical biases. The least they deserve is free prescriptions"
After the government rejected calls for such a move, community initiatives can’t continue to be the only answer to survivors’ persisting inequalities A few weeks ago, during a landmark “Treatment of…
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Read the full storyDating with Sickle Cell Remains a Taboo
Alidor Gaspar says he wanted to make sure Sickle Cell wouldn't continue in his family, WHEN ALIDOR Gaspar was diagnosed with sickle cell disease as a young child, he couldn’t have predicted how the…
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Read the full storyCovid: Vulnerable NHS patients to be offered new drug
A new Covid drug designed to reduce the risk of vulnerable patients needing hospital treatment will be available on the NHS from today. Sotrovimab is a monoclonal antibody given as a transfusion to…
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Read the full storyUAB says new gene therapy could one day be cure for sickle cell disease
BIRMINGHAM, Ala. (WBRC) - New hope for those living with sickle cell disease. Research from UAB shows a new gene therapy could one day be the cure for sickle cell disease. Dr. Julie Kanter explained…
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Read the full storySickle cell patients are not able to receive free prescriptions
A health minister has confirmed there are no plans for sickle cell patients to receive free NHS treatment during a landmark parliamentary debate. Maria Caulfield was quizzed at the ‘Treatment of…
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Read the full storyIncreased Risk of Stillbirth for Pregnant Women With Sickle Cell Trait
There is currently not much known about the relationship between pregnancy outcomes and sickle cell trait. New research indicates an increased risk of stillbirth for delivering mothers who have the…
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Read the full storyCovid-19 Updates
We aim to provide members with both general and haematology specific up-to-date COVID-19 information. This advice is for healthcare professionals. Patients looking for further information on their…
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Read the full storyFirst Major Crisis After 10 Years
So, this year has been an incredible year full of happiness, blessings and new ventures. It has also been a year of loss, sadness and broken relationships. In March I became grandmother to identical…
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Read the full storyTreatment of Sickle Cell: Westminster Hall Debate - Pat McFadden MP
On 8 December, Pat McFadden MP is leading a Westminster Hall debate on the treatment of sickle cell. To inform his debate, he wants to hear about your experiences. The deadline for submissions is…
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Read the full storyTell us Your Experience of how Newborn Screening Results for Sickle Cell and Thalassaemia were Communicated
Help improve the sickle cell screening programme by joining our online focus group and receive a gift voucher as a thank you. We are looking for people who have sickle cell or trait and have not yet…
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Read the full storyCovid: Why are UK cases so high?
Thanks to the vaccine, a case of Covid is much less likely to land you in hospital. But soaring infections - which are outstripping some European nations - are still proving a cause for…
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Read the full storyHow To Live With Sickle Cell: Sickle Cell and I
The above is the title of my book that was published in May 2021. I have been blogging and writing about sickle cell for over 6 years. My name is Tola Dehinde. I was diagnosed as having sickle cell…
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Read the full storyPrescription Change Petition
Prescription Charge Petition Add Sickle Cell to the Prescription Charge Exemption List Anusjka Regis-Etumnu has set up a petition to add sickle cell disorder to the prescription charge exemption list.
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Read the full storyVaccines: Your Questions Answered
Over half of UK adults havehad the jab thanks to the dedication of NHS workers but some are still hesitant– so our experts are here to help clear up those Covid injection concerns. We've spoken…
