Sickle Cell Society @SickleCellUK
The Sickle Cell Society supports and represents people affected by sickle cell disorder to improve their overall quality of life. sicklecellsociety.org London Joined February 2011-
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If you're a young individual (aged 10-24) in London with Sickle Cell, join our Peer to Peer Mentoring program. Our mentors, who also have Sickle Cell, can provide guidance on managing the condition and help you connect with others. Scan the QR code below for more information.
On the 21st of April, the London Marathon 2024 saw amazing individuals running in support of the Sickle Cell Society. Participants shared Marathon pictures to raise awareness, showcasing their strength, compassion, and inspiring commitment to the Sickle Cell Society's mission.
Donating is easy! Scan the QR code or text ALL4SICKLE to 70085 to donate £5. Texts cost £5 plus one standard network rate message. Your donation supports Sickle Cell awareness and assistance for those affected. Thank you! 🙏 #SickleCellAwareness
Join us in cheering on our incredible community member, Dr Adebayo Alade! He's running the Vitality 10K on the 22nd September for the Sickle Cell Society. Follow Dr Adebayo Alade journey through his fundraisings page: ow.ly/bBsM50Rm3K0 #Sicklecell #Sicklecellawerness
The Sickle Cell Society is looking for mentors to join the team and support in delivering the #SickleCell Children & Young Person’s Peer Mentoring Programme. It aims to improve the health and well-being of young people with SCD across London. Apply: ow.ly/thBm50QjHSn
Calling Sickle Cell Patients, Caregivers, & Relatives in London! Join us on May 16, 2024, for a focus group with the Sickle Cell Society and London Ambulance Service. Share your experiences to shape future healthcare services. RSVP: [email protected] #SickleCell
A huge thanks to all who ran the London Marathon on April 21 for the Sickle Cell Society: Brenda , Deji Akande, Gerard Williams, Kunmi Williams, Reynold Keith Kekor, Zaeem Abdullahi & Trojan Gordan. Your dedication and support are truly inspiring. It's an honour to witness. 🎉
On April 16, our Trustee Michelle Salter moderated two panels at the Economics' Impact Therapy Summit. One focused on "Giving Patients Their Voice," the other on "Easing bottlenecks across the CGT value chain." Michelle's dedication to sickle cell awareness shines. Thank you!
Do you use Birmingham City Hospital or Birmingham Children's Hospital? We want your views for a patient review of sickle cell services. Join us for a 30-minute online meeting on Tuesday, May 14th to share your thoughts. Details and booking on Eventbrite ow.ly/eu7Z50RiOpt
4 more races added to our website. Join the race to beat sickle cell at upcoming half marathons! 🏃♂️🏃♀️ Lace up for a cause and be a #HalfMarathonHero. Sign up now via our website & make every step count! 👉 sicklecellsociety.org/fundraising/#e… #RunForACause
Join NIHR at the London Sickle Cell Disease Awareness and Research Event on May 18, 2024. Learn about the latest research and support the cause. Register for in-person or online attendance: In person:ow.ly/KM5t50RgiJn Online:ow.ly/ezPJ50RgiJp #SickleCellAwareness
Join us for the 1st RAIN Summit for Patients with Rare Anaemias, organized by RAIN in collaboration with TIF and APTM – Romania. May 18th-19th, 2024 at Grand Hotel Bucharest. Our CEO, John James, will be speaking! Sponsored packages to join available now:ow.ly/jmSx50Rf3lB
If someone is having a sickle cell crisis, acting fast saves lives. NHS colleagues, this e-learning module will help you spot the signs of a sickle cell crisis and learn how it should be treated. e-lfh.org.uk/programmes/hea…
You can now book your spring COVID-19 vaccine online or via the NHS App if you are eligible. Appointments will start from 22 April. You don't need to wait to be invited. Find out more and book now at nhs.uk/book-vaccine.
🌷 With spring on the horizon, let's prioritize our wellness! Here's a fun wellness bingo for the weekend. Challenge yourself to check off as many squares as you can. If you want more personalized Sickle Cell wellness tips, drop a comment below. 💫 #SickleCellAwareness
We’re extending our children and young person’s mentoring programme across Manchester, Liverpool and Sheffield. For more details : ow.ly/qrGy50ReUKh
🚨 Today's the deadline, April 12th! Please ensure all submissions are sent before the day ends. Your feedback is crucial to enhancing ambulance response and providing better care for Sickle Patients. Thank you for your contribution! 🏥#SickleCellCare
🚨 Today's the deadline, April 12th! Please ensure all submissions are sent before the day ends. Your feedback is crucial to enhancing ambulance response and providing better care for Sickle Patients. Thank you for your contribution! 🏥#SickleCellCare
A huge thank you for sending in your comments so far to the Exa-cel gene therapy consultation. We can no longer accept any more emails, but you can still take part by sending your comments directly to NICE through their consultation page by 5pm 11 April buff.ly/3vNldWO
The NHS Innovation Accelerator (NIA) is proud to introduce their 2024 cohort of Fellows. We're delighted to share that our CEO, John James, has been selected as one of the 12 new NIA Fellows, bringing a wealth of expertise and innovative ideas to the forefront.
We are delighted to announce the newest cohort of #NIAFellows24 - live in Manchester. Stay tuned to hear more about the innovators and how they are contributing to the @NHS and wider healthcare ecosystem > nhsaccelerator.com/news-item/inno…
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You can now book your spring COVID-19 vaccine online or via the NHS App if you are eligible. Appointments will start from 22 April. You don't need to wait to be invited. Find out more and book now at nhs.uk/book-vaccine.
We are delighted to announce the newest cohort of #NIAFellows24 - live in Manchester. Stay tuned to hear more about the innovators and how they are contributing to the @NHS and wider healthcare ecosystem > nhsaccelerator.com/news-item/inno…
I fully support Exa-cel being available for Sickle Cell sufferers cos of the worsening impact sickle cell has over time, on life expectancy & risk of mortality. @NICEComms needs to reconsider their decision and allow the gene therapy to be used @SickleCellUK
Disappointed by NICE's draft decision on Exa-cel gene therapy for sickle cell. With @AnthonyNolan, we urge NICE to reconsider. Share your views in the consultation by April 11. Let's ensure NICE hears from everyone impacted. Details: ow.ly/s2BS50QT7HJ
📢If you have experience of #SickleCell, we need your help. ICYMI, @NICEComms announced a draft decision NOT to fund a potentially lifechanging drug for sickle cell patients on the NHS. We're asking the sickle cell community to respond to the consultation: bit.ly/43lIRGw
🚨 Exa-cel is a new gene therapy that could offer an effective cure for severe sickle cell. Today @NICEComms announced their draft decision NOT to fund it on the NHS. We need your help. With @SickleCellUK, we’re asking the sickle cell community to respond nice.org.uk/guidance/indev…
Please retweet. You have until next week to comment.
NEW TREATMENT FOR SICKLE CELL REJECTED On the 14th March @NICEComms published it’s draft decision NOT to recommend #Casgevy for NHS funding. #SickleCell HAVE YOUR SAY ' NICE Consultation on a CURE for Sickle Cell - YouTube youtube.com/watch?v=E20-z3…
*Have Your Say* and please *feel free to share* widely ✊🏿 @SickleCellUK @NICEComms @AnthonyNolan #sicklecellwarrior youtu.be/E20-z3qOeio?si…
PLEASE retweet! 🙏🏽 ‘NICE are conducting their appraisal, but on 14 March published a draft decision NOT to recommend exa-cel gene therapy for NHS funding. They are not certain about the severity of #sicklecell.’ Deadline 4 YOUR views? Thurs 11 April! See: ow.ly/s2BS50QT7HJ
Disappointed by NICE's draft decision on Exa-cel gene therapy for sickle cell. With @AnthonyNolan, we urge NICE to reconsider. Share your views in the consultation by April 11. Let's ensure NICE hears from everyone impacted. Details: ow.ly/s2BS50QT7HJ
Yesterday I chaired another important #SickleCell & #Thalassemia APPG session alongside @SarahLudford, @JohnJamesOBE & @SickleCellUK We discussed new Sickle Cell treatments, @NHSEngland's Inequalities Improvement Programme & @NorthMidNHS Ward memorial for Evan Nathan Smith.
If you're near #ChiswickTownHall this am, there's still time to drop into our #HealthRoadshow running 10:00-14:00. Get a FREE health check, learn about access to recourses, speak to pharmacists & meet ppl from your community! #YourHealthinYourHands @H4All_Charity @EHU_ARCNWL
Out today: A report from our Patient Advisory Council. How can patients get new medicines faster? They offer insights to NHS + govt to help tackle health inequalities. abpi.org.uk/media/news/202… @swoolnough @DrTomNutt @NMRPerrin @HilaryAlzUK @SamanthaJBarber @jacoblant @SickleCellUK…
@SickleCellUK Happy valentines x.com/itz_beecy/stat…
A new device is being used to detect those at risk of a stroke and improve waiting times for treatment at @WorcsAcuteNHS. The adhesive ECG patch analyses the heart's electrical activity using AI and can potentially reduce the risk of stroke by two-thirds. 👏
We’re delighted that @imperialcollege is leading our latest project to understand inequalities in the care of sickle cell disease patients across England, by comparing their care with other rare conditions. Here is the link to their new project blog page: blogs.imperial.ac.uk/uk-sickle/
Almost 18,000 patients living with sickle cell disorder and thalassaemia in England are now eligible to receive a "blood matching" genetic test. @ryanmullally2 @redcellemma supporting and listening to patients. Supporting #SeeMEFirst @SickleCellUK @EAnionwu
@SickleCellUK Thank you so much for sharing, and your support.
To help with managing #SickleCell, I’m donated 9 bags of blood every 4 weeks, that’s 117 bags of blood a year🩸 117 complete strangers keeping me going. To say I’m grateful is an understatement! If you can, please consider giving blood 🫶🏾 #HerSickledJourney
Lively and humorous pre-Christmas lunch with Mia and Juliet, friends I’ve known since the 1970s!
This week at the latest #ARCNWLFellowship Day EHU Members Ganesh and Karuna presented frameworks and issues relating to the importance of equality, diversity and inclusion in improvement projects.
Guest presenters for our December #ARCNWLFellowship Day were Improvement Leader Fellow @chellen_karuna & our Assistant Director @gjsathyamoorthy They discussed frameworks for considering equality, diversity & inclusion and emphasised it's important role in improvement projects
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