We are back at the #ExRdFest this June! The weekend is a #free event with loads of #science , #art , and #music activities, including our #InvisibleWarrior stand spreading #SickleCellAwareness . You can sign up for your free tickets: eventbrite.co.uk/e/great-exhibi… #sicklecell #bloodscience

'without accessibility, you’re allowing an environment that says “no entry” to the #disabled community'

'I encourage you to think today about what you can do differently to make the world around you more inclusive and accessible to all people'

#invisibledisability #sicklecell

This is a lovely small win shared with us by Richard who has #sicklecell and volunteers in his local community as a befriender. We hope you will take the time to read his story. To share your own #smallwin with us see the final poster for details Elizabeth Rhodes St George's NHS FT

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

Today is at 5pm is the close of the NICE Consultation over their rejection of Casgevy; a cureative treatment for Sickle Cell Disorder *submit your comments* to nice.org.uk/guidance/indev… *or* email them to [email protected] *Good luck Warriors* ✊🏿

The crucial action for #sicklecell patients, their families and clinical communities is to participate in the NICE consultation, open until 11 April 2024.
You can comment on this draft guidance here: nice.org.uk/guidance/indev…

Please retweet.

You have until next week to comment.

London Sickle Cell Disease Awareness and Research Event: learn more about the latest advancements in #sicklecell #research .

🗺️London WC1H 9RS
📅Sat, 18 May 2024 10:30 - 15:00 BST

Info and signup: eventbrite.co.uk/e/london-sickl…

Disappointed by NICE's draft decision on Exa-cel gene therapy for sickle cell. With Anthony Nolan, 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

All Sickle Cell patients, caregivers, & relatives in London! Help improve ambulance care by sharing your experiences. Submit as a Microsoft Word doc to [email protected] by April 12. More information and questions can be found at: sicklecellsociety.org

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

It's not Sickle Cell related, but very relevant on the topic of #LetsTalk . We met the lovely Kat Brown as she interviewed the #InvisibleWarrior team for the Imperial College London magazine, and she shared the news about her two (!) new books! #letstalkaboutit #books #invisiblestruggles

'The Team is particularly keen to hear from creatives who have a personal or professional connection to #SCD and those willing to work collaboratively with patients and researchers in the design and delivery of the output.'
See: drive.google.com/file/d/1v75HnQ…
#SickleCell #film #research

Have you used Voxelotor? We want YOUR input! Despite NICE's rejection, we're teaming up with Pfizer to appeal this decision. 🤝 Help us by sharing your experience with Voxelotor. Your feedback can make a difference! Contact us at : [email protected] to participate.

The deadline for the LMB Rising Talent Fellowship for Black heritage scientists is fast approaching - apply by 11.55pm Sunday 31st March 2024.

For full details check here: www2.mrc-lmb.cam.ac.uk/recruitment/ri…

Please share with your networks! #BlackinSTEM

Very excited to announce that the #InvisibleWarrior project will be back at the #ExRdFest on 15-16 June! You can now sign up for the festival (it's free): eventbrite.co.uk/e/great-exhibi….
More details to follow, you can expect #sicklecellawareness , #bloodscience , #mentalhealth and more.

'Nutrition in Sickle Cell Disease is a neglected part of standard care impacting patient outcomes, despite it being widely researched.'
Have a look at the #thesis of Claudine Matthews on the importance of #nutrition in #sicklecell : aru.figshare.com/articles/thesi…

Happy #InternationalWomensDay ! Shining a light on the amazing women of our #InvisibleWarrior team💛. Special mention to our founders:
🤍Louisa, see her story living with #sicklecell here: youtube.com/watch?v=8JCmQy…
🧡Linda, read about her work here: imperial.ac.uk/stories/celebr…
#BeKind

'Expansion of automated red blood cell exchange services, in which the selected trusts had expressed interest, is expected to help counter inequalities in healthcare access and outcomes among those with the blood disorder, according to NHS England'

Beautiful! Please have a read.

'To each patient, caregiver, and ally, I urge you to continue to support your #sicklecell communities. Be present, be active, and don’t take time for granted. We need you.
Death is very much a consequence of sickle cell disease.'