News and Updates
News and Updates
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Read the full storyUKFHD 59th Academic Meeting - Wednesday 7th May 2025 - Hybrid Event - Registration Now Open
UKFHD 59th Academic Meeting Registrations are now open for the UKFHD 59th Academic Meeting which is being held on Wednesday 7th May 2025. This will be held as a hybrid event from the Cavendish…
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Read the full storyACLT WEBINAR | New Sickle Cell Gene Editing Therapy: Q&A
Join Sickle Cell Warriors, Clinicians, and ACLT exploring the advancements in gene editing therapy and answering your questions. Join us on Wednesday 19th March for an insightful and informative…
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Read the full storySickle Cell Disease Research: A Day of Learning, Art, and Empowerment
We invite you to a special and interactive event dedicated to people living with sickle cell disease (SCD), their families, and carers. This day is all about learning, connecting, and exploring how…
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Read the full storyChildren's Academic and Health Results for Sickle Cell Disease in England (CARES)
We aim to investigate the health outcomes, health service utilisation, and educational outcomes of all children with Sickle Cell Disease in England. Sickle cell disease (SCD) is one of the most…
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Read the full storyWest London HCC Education Day
On Wednesday the 15th of January the HCC (Sickle Cell Network) delivered a free training day at the Royal College of Physicians. Please see the below snippets of some of the talks which took place.
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Read the full storyManaging Nutrition in Sickle Cell Disorder
Dr Claudine Matthews has developed this online course: To improve sickle cell patients' access to evidence-based nutrition and diet education tailored to their unique nutritional needs, risks…
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Read the full storyGenomics England drives Sickle Cell research through the Diverse Data Initiative
In black communities, more research is needed to improve our understanding of health conditions and to develop better treatments. The IBHO BioResource is a collaboration between NIHR BioResource,…
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Read the full storyRevolutionary gene-editing therapy for sickle cell offers hope of a cure for NHS patients
NHS patients with sickle cell disease will soon have access to a revolutionary gene-editing treatment, offering new hope for a cure. The one-off gene therapy, known as exagamglogene autotemcel (or…
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Read the full storyImproving Black Health Outcomes Education Events
Join us at Hammersmith Hospital for a series of exciting and interactive patient engagement events! Whether you're a patient, family member, or carer, this is your chance to dive into the world of…
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Read the full storyThe Sickle Cell Children and Young Persons Peer Mentoring Programme
The Mentoring Scheme is for people living with sickle cell aged 10-24 . Sign up for FREE support and advice in our one-to-one mentoring sessions led by peer mentors, all of whom have sickle cell…
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Read the full storyGates Foundation to invest in Tessera SCD gene-editing treatment
Foundation to invest up to $50 million to support development, company says The Bill and Melinda Gates Foundation is investing up to $50 million in Tessera Therapeutics to support the development of…
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Read the full storyWest London HCC Training Day
On Wednesday the 15th of January the HCC (Sickle Cell Network) is delivering a free training day at the Royal College of Physicians, Please register via the link below: Office Forms Link to…
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Read the full storySickle Cell Alliance Formed to Accelerate Innovation and Investment in Research
Imperial College Healthcare NHS Trust and Imperial College London have co-launched a new partnership, the Sickle Cell Alliance, to improve the lives of patients with sickle cell disease through…
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Read the full storyCianna's Smile Youth Entrepreneur Club
We’re excited to invite young people aged 8 to 16, impacted by sickle cell, to join the Cianna’s Smile Youth Entrepreneur Club—a unique opportunity to gain valuable digital skills and learn about…
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Read the full storyDo You Have Sickle Cell and Have Regular Pain Crisis or Blood Transfusions
REDRESS is a clinical research study investigating the use of stem cell transplant (also called bone marrow transplant) from half-matched family donors to treat people with severe sickle cell…
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Read the full storyAre you between 10 and 24 years old? Do you have sickle cell disorder?
Do you live in London? Are you registered with a local GP? Are you receiving care from the NHS? Join our new children and young people’s mentoring programme to get the help and support you…
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Read the full storyImperial Lates Senses
Join the Imperial Lates for an evening of sensory stimulating activities to explore science. This instalment of Imperial Lates will be full of sensory stimulating activities to explore science.…
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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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Sickle 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 storySickle Cell and Genomics Research Aims
Join Sickle Cell Society on July 30th for an online Sickle Cell & Genomics Workshop for under 30's! Learn about genomics, their impact on health, and share your views on future research priorities.
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Read the full storyGene Therapy and Its Potential For Treating Health Conditions
Imperial College Academic Health Science Centre is hosting an online seminar, two experts will talk about their research into gene therapy. Professor Uta Griesenbach is Professor of Molecular…
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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 storyOther ways to get involved in sickle cell research
How patients can leverage their experiences to improve care and treatment Last week, I shared that I’m conflicted about joining clinical trials that test potential treatments for sickle cell disease.
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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 storyARIZE! Conversations Talk-Show Series
In Commemoration of International Sickle Cell Day 2024... Host: HRH Princess Moradeun Adedoyin-Solarin - Veteran Broadcast Journalist | Media Specialist | Digital Consultant Guests: Ms Aderonke…
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Read the full storySickle Cell Awareness Day at Hammersmith Hospital
Imperial College Healthcare NHS Trust will be holding an event to raise awareness on Sickle Cell Disease. We hope the event can help contribute to reducing stigma and drive meaningful change for the…
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Read the full storySickle Cell and Genomics Workshop
Sickle Cell Society are hosting workshops to gather insights from those with sickle cell, carriers, and carers to shape future research in sickle cell and genomics. Join in July & August, online or…
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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 storyInvisible Warrior at The Great Exhibition Road Festival 2024
Invisible Warrior SCD will be back at The Great Exhibition Road Festival on June 15th from 12pm - 18:00. Talk to scientists to learn about blood, blood cells and blood diseases. Meet a patient with…
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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 storyCommunity Coffee Morning pilot across 5 boroughs in SW London
Haemoglobinopathy - 2-year Community Pilot across 5 boroughs in SW London Central London Community Healthcare Trust haemoglobinopathy team have be funded to expand their service. This is a London…
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Read the full storyAkanji, The Studio Creatively Raising Awareness On Sickle Cell Through Beautiful AI Art
An exhibition featuring works, films and performances from artists living with Sickle Cell. Time & Location 03 May 2024, 18:00 – 05 May 2024, 18:00 Opening Event Saturday 10AM-18:00 Public…
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Read the full storySickle Cell Family Retreat 2024
From 30th August to 1st September 2024, a group of around 30 families who have at least one child aged 6-15 years old with sickle cell will come together at Whitemoor Lakes in Staffordshire (30 mins…
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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 storyCome Save Lives With Us
NHS Blood and Transplant Presents a Community Fun Day For All The Family!! We are working hard to increase the number of people giving blood and we urgently need your help. There is a significant…
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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 storyImperial Lates Romance & Reproduction - The Inheritance of Sickle Cell
Grab your gals, pals, a mate or even a date and head to the next Imperial Lates! In this Valentine’s Day and LGBT+ History Month special, science gets sexy as we delve into attraction, intimacy and…
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Read the full storyCrizanlizumab Update
Crizanlizumab statement. January 2024 At the Sickle Cell Society, we are all profoundly disappointed by the 10 January decision of the Medicines and Healthcare products Regulatory Agency (MHRA) to…
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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 storyHCC Education Session Cardiac failure in Sickle Cell disease
Dear HCC Members and Colleagues, The West London HCC is very pleased to announce that Dr Malcolm Walker a Cardiologist with a specific interest in cardiovascular complications of thalassaemia…
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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 storyWhat's a Blood Type? Why is it Important for Transfusion?
Check out the Healthcare Science Show latest episode Blood Transfusion and Sickle Cell Disorder What's your blood type? In this episode we hear about blood from Dr Shane Grimsley, a Clinical…
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Read the full storyPatient Voices for Social Prescribing
A new London-based patient voices programme for people with lived experience of social prescribing. Social prescribing has huge impacts on patients’ lives, through providing access to support for…
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Tackling 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 storyCoping with Parental Guilt in Sickle Cell Disease Management
Having a child with sickle cell disease can prompt many emotions for parents Having a child with sickle cell disease can prompt many emotions for parents, particularly guilt. In this column, I’ll…
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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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UK 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 storyAre You a Sickle Warrior?
Are you a Sickle Warrior? The New Black Film Collective have now launched their Sickle Cell Warriors program. They are looking for Sickle Cell Warriors between the age of 15-18 to join. If…
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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 storyPatient Public Voice Group - Bone Marrow Transplant Talk
The West London HCC is pleased to announce Dr Steven Okoli and Professor Eduardo Olivarria at Hammersmith Hospital are looking to give a presentation on adult Bone Marrow Transplant with a follow-up…
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Read the full storyHCC Education Session: Lab Results and Newborn Screening
The West London HCC is very pleased to announce that Tim Christofi (Pathology lead) and Laura Fraser (Head of Haemoglobinopathy Screening, Central Middlesex Hospital) at London North West University…
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Acute pain management in sickle cell disease: update national pain group
Presentation: Acute pain management in sickle cell disease : update national pain group and example of pain service. Speaker: Dr Sanne Lugthart, MD, PhD, Consultant Haematologist, University…
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Read the full storySickle Cell and The Workplace: Policy and Procedures - Know Your Rights
We would like to invite you to the next Invisible Warrior workshop: Sickle Cell and The Workplace: Policy and Procedures - Know Your Rights Date: Monday 30th October 2023 Time: 7-8.30 pm…
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Read the full storyResearch in Red Cell Disorders Information Talk
This is a great opportunity for all red cell patients in the south of England to learn about the research process! It will also be a chance to ask questions freely, and air any concerns you may have…
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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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How I find the silver lining while living with sickle cell disease
This month I'm recognizing the benefits I've gained from my condition As most of us know, sickle cell can be a debilitating disease. I’ve been diagnosed with it since I was 18 months old, yet it…
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Read the full storySimulation Training
Check out Dr Layan Allawi’s (the Darzi Fellow at London North West University Hospital Trust) Teaching session on Simulation training by clicking here
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Read the full storyEducation Session Short Clips
Why not check out our latest Education session! We have some short clips which are now available on our Educational Establishment Resources page. For more or head over to our YouTube Channel where…
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Read the full storyNational Education Session on Acute Complications in SCD
The West London HCC is very pleased to announce that on Friday 8th September 2023 Dr Sanne Lugthart is giving a talk on Acute Complications in Sickle Cell Disease via Microsoft Teams This event is…
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Read the full storyNational Education Session on Thalassaemia - A Nursing Focus
The West London HCC is very pleased to announce that on Monday 30th October 2023 the nursing team at Manchester Royal Infirmary will be giving talks on Thalassaemia - A nursing Focus via Microsoft…
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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 storyRed Cell Condition Support Group
Join Red Cell Pain Management on Monday 31st July, 1-2:15pm for their event on adjusting to going from hospital to home. This event will be held via teams, for more information please email here
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Read the full storyEducation Session on Sickle Cell for School Nurses and Teachers
The West London HCC is very pleased to announce that Dr Layan Allawi (Darzi Fellow at London North West University Healthcare Trust), Elizabeth Olukoga (Specialist Paediatric Sickle Cell Community…
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Read the full storyBuilding Trust Project
Building Trust project Learning from Covid by building trust Background The Covid-19 pandemic both increased health inequality and shone a spotlight on it. It revealed that black and Asian…
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Read the full storyEducation Session on Fatigue in Sickle Cell Disease
The West London HCC is very pleased to announce that Brenda Poku , Research Fellow and a Principal Investigator on an ESRC New Investigator Grant at the University of Nottingham, is giving a…
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Read the full storyRed Cell Celebration Day
Join Red Cell Pain Management on Monday 19th June, 3-6pm for their Red Cell Celebration Day for people with sickle cell and thalassaemia and also staff members from St Georges Trust. There will be…
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Read the full storyInvisible Warrior & Design For Sickle Cell at the Great Exhibition Road Festival
Join Invisible Warrior & Design For Sickle Cell at the Great Exhibition Road Festival! Talk to scientists to learn about blood, blood cells, and blood diseases. Meet a patient living with Sickle…
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Read the full storyHCC Teaching session Antenatal Screening of Haemoglobinopathies
West London Haemoglobinopathy Coordinating Centre (HCC) Antenatal Screening of Haemoglobinopathies (Sickle Cell & Thalassaemia) Midwives’ Virtual Education Programme Wednesday 17th May 2023 @ 2pm…
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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 storyTransition Workshops
Please join us for the Transition Workshops event held by Sickle Cell Society. This event will occur every week starting Saturday 25th February until Friday 31st March for ages 13-19 led by…
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Read the full storyThe Sickle Cell Series - The Immune System: With Us or Against Us
Join us for the second episode of the series by Dr Rossby Awadzi and the rest of the Sickle Cell Series team on February 23rd from 6:30pm - 8:00pm. For more information please email us
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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 storyHCC Education session - Cerebrovascular Function in Paediatric Sickle Cell Patients and Transcranial Doppler Imaging
The West London HCC is very pleased to announce that Prof Fenella Kirkham (Professor of Paediatric Neurology, Developmental Neurosciences Dept. UCL GOS Institute of Child Health) and Prof. Dawn…
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Read the full storyInvisible Warrior at the Imperial Lates - Drug Experiments
We are excited to announce that the Invisible Warrior team will be back at another Imperial Lates event! When: Thursday 9th February, 6-9 pm GMT. What: Interactive stand on sickle cell disease and…
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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 storyHuman-Centred Design: How Can We Use Design-Thinking to Investigate The Impact of Sickle Cell
Human-centred design: How can we use design-thinking to investigate the impact of Sickle Cell You are invited to participate in this research project which seeks to visually represent the impact of…
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Read the full storyPreparing for the Holiday Season and End of Year Reflections
It’s the holiday season & this can bring twinkling lights & glittering moments. It can also be a busy period, one where we might notice the cold & feelings of isolation. How do you pace things…
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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 storyHow Breakthrough Treatment Has Changed The Lives of Sickle Cell Patients
Gloria Ademolu would wake every morning in pain. The 26-year-old would need five prescription painkillers a day to cope with the agony caused by sickle cell disease. The engineering student is one…
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Read the full storyInvisible Warrior Workshop: How I Reduced My Pain Medication With the Support of My Psychologist
We are excited to announce our next workshop "How I reduced my pain medication with the support of my psychologist". Hear the story of SCDwarrior Taofik, who was keen to reduce his pain medication…
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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 storyHelping Sickle Cell Patients With the Cost of Heating
From October 2022 energy bills will have almost tripled in just one year, at a time when Londoners are already being affected by the growing cost of living crisis. The Mayor is acting now to support…
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Read the full storyInvisible Warrior SCD at the Imperial Lates Get to know your red blood cells
Please join Invisible Warrior at Imperial Lates: Tiny Science – Get to know your red blood cells We are joining the first Imperial Lates of this academic year: Tiny Science. We will host an…
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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 storySickle Cell and PhD
Experiencing Chronic Pain While Being a Scientist.... Join us for our next workshop "Sickle Cell and PhD: Experiencing chronic pain while being a scientis". We are joined by Dr Michael Olanipekun…
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HCC Education Session: Paediatric Nursing Sickle Cell in Emergency Departments
The West London HCC is very pleased to announce that Nadia Osman (Paediatric Haemoglobinopathies Clinical Nurse Specialist at London North West University Healthcare NHS Trust) and Catherine…
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Read the full storyInvisible Warrior Workshop the history of vaccines
What is a vaccine and how have they changed overtime? What are the benefits of taking a vaccine for an individual and for the whole population? Join the Invisible Warrior Workshop on Monday 26th…
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Read the full storyNational Education Session: Management of Pregnancy in Sickle Cell Disease
The West London HCC as part of the National education programme is very pleased to announce that Dr Mamta Sohal (Consultant Haematologist at Imperial College Healthcare NHS Trust and Training…
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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 and Thalassemia APPG holds Annual General Meeting in Parliament
Sickle Cell & Thalassemia APPG holds Annual General Meeting in Parliament on Wednesday 22nd July 2022. New Chair and Officers elected. New Chair is Janet Daby MP. New officers are, Pat McFadden MP,…
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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 storyNew on Rare Disease Advisor SCD: Patients With SCD Report Improved Overall Health After Voxelotor Treatment
Patients With SCD Report Improved Overall Health After Voxelotor Treatment Voxelotor treatment may have a positive impact on the way patients with sickle cell disease (SCD) perceive their…
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Read the full storyDo you or anyone you live with have Sickle Cell
The Dragons Den Product Design and Pitch workshop is a great way to get young people to think entrepreneurial and try their hand at pitching. Sign up here: https://forms.gle/jmFunhECKiQ9Yrjs7
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Read the full storyBlood transfusions gave me an extra 24 hours with my dying mum - now I give blood in her memory
A London woman from Walthamstow was inspired to give blood after she was able to say goodbye to her mother thanks to blood transfusions. Vanessa Davis, 24, had seen her mum's health start to…
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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 storyPatient Sickle Cell Awareness Day 2022
Sickle Cell Awareness & Patient Education Day 2022 Jul 13 @ 09:45 – 16:30 We are happy to announce our next Sickle Cell Awareness & Patient Education Day for 2022 which will be for all patients,…
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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 storyWhat does it mean to advocate for Sickle Cell Disease?
Why are there more female Sickle Cell Disease advocates? Join the discussion at our next workshop on Monday 25th April; 7pm BST. Signup via invisiblewarrior.scd@imperial.ac.uk
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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 storyNHS Race and Health Observatory appoints sickle cell expert
The NHS Race and Health Observatory is pleased to announce the new appointment of a medical advisor to explore sickle cell inequalities in NHS healthcare delivery. Dr Carl Reynolds, a consultant…
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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 storyFirst new treatment for sickle cell in 20 years By Adina Campbell and Philippa Roxby BBC News
Painful episodes The drug, crizanlizumab, made by Novartis, is injected into a vein and can be taken on its own or alongside standard treatment and regular blood transfusions. And in a trial,…
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Read the full storyJCVI issues updated advice on COVID-19 vaccination of children aged 12 to 15
The JCVI has reviewed the evidence on vaccinating children aged 12 to 15 who do not have underlying health conditions that put them at increased risk from severe COVID-19. The assessment by the…
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Read the full storySickle Cell Disease
Nature have produced a range of interesting articles about sickle cell, gene editing, new-born screening and more. Read them all here: Link A condition that affects many people of African descent…
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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 storyUpdated guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19
The guidance has been updated in light of the move to a Tier 4 lockdown for much of the UK population resulting from the recent rise in COVID-19 cases and admissions.
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Read the full storyClinical Trials & Research
CSL889 A clinical research study in adult people with sickle cell disease. A Phase 1, Multi-Center, Open Label, Single Ascending Dose Study to Evaluate the Safety, Tolerability, and Pharmacokinetics…
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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…
