UK Thalassaemia Society
@teamuktsWe support families & professionals, educate, campaign for change & fund research.
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18/10 was #MenopauseAwarenessDay & we marked it by launching our education series on Menopause with Thalassaemia! @VikramSinai gave an insightful talk to kick off the 4-part series which will run every Wednesday till Nov 6th. Catch up on the talk here: uclh.nhs.uk/theredcellnetw…
Come & work with us! Part-time band 7 clinical/counselling/health psychology post in #sicklecell & #thalassaemia healthjobsuk.com/job/UK/London/… Creative and flexible work in a lovely team where psychology is really valued @docesr @StGeorgesTrust @SickleCellUK @teamukts @HCCWestLondon
We are excited to be running a series of Menopause Awareness Sessions with an exclusive focus on Thalassaemia. Starting October 16th Sign up uclh.nhs.uk/theredcellnetw… We are teaming up with @VikramSinai and Babita from New Chapter Nutrition for Menopause! @teamukts @HCCWestLondon
We are holding a patient/ carer meeting on September 16th 7-8pm & would ❤️ to hear about your experiences. What works well for you? What would you like to see improve? You can speak honestly & openly & won’t be identified! Please email office@ukts.org to register!
We are holding a patient/ carer meeting on September 16th 6-7pm & we would love to hear about your experiences. What works well for you? What would you like to see improve? You can speak honestly & openly & won’t be identified! Please email office@ukts.org to register!
The program for the next UKFHD education day is almost finalised!! See you on the 19th of November! acrobat.adobe.com/id/urn:aaid:sc… @SCS @NatHaemPanel @teamukts @KHPHaematology
Have you seen this video message from our patron Peter Polycarpou?! If not, you’re in luck! Thanks Peter for all of your support and advocacy of these year! We are grateful to have you on our team! #teamukts
Islington vision for a greener, healthier area between Nag’s Head to York Way recently became a reality! parikiaki.com/2024/08/isling… to offer ‘life-changing’ gene therapy for blood disorder thalassaemia parikiaki.com/2024/08/nhs-to… #Thalassaemia @teamukts
I am not sure I have ever been more excited and happy for any news in my working life. This will be truly life changing and I am so proud of colleagues and friends who kept going until NICE SAID YES!!!
We are thrilled to share some exciting news! The NHS will soon offer gene therapy to patients over 12 with transfusion-dependent #Thalassaemia, thanks to NICE's groundbreaking recommendation under the managed access agreement! 🌟
Casgevy!!! Nice approved for beta thal. CASGEVY is a one-time therapy to treat people aged 12 years and older with Beta Thalassemia, who need regular blood transfusions. Finally a curative therapy option for our thalassaemia community @UKFHD1 @teamukts @GSTTnhs @KHPHaematology
Roanna is representing for Thal. A good news day.@NatHaemPanel @SickleCellUK @teamukts
Fantastic to hear that NICE have approved gene-editing therapy as a treatment and potential cure for thalassaemia. This will transform the lives of patients with beta-thalassaemia who have to have regular blood transfusions. Well done all at @teamukts for lobbying hard for this
Such amazing news! Well done to @teamukts for such hard work in getting this across the line!
We are thrilled to share some exciting news! The NHS will soon offer gene therapy to patients over 12 with transfusion-dependent #Thalassaemia, thanks to NICE's groundbreaking recommendation under the managed access agreement! 🌟
In a significant first, NICE recommends Casgevy, the first licensed treatment based on genome editing for Thalassaemia! This is so important for patients. @teamukts @NHS_RHO @NatHaemPanel @KHPHaematology @SickleCellUK
Delighted to share this great news! Thanks to brilliant leadership @AmandaPritchard @SamRobertsNHS, support from patients & Herculean effort by colleagues across @NHSEngland, @NICEComms @MHRAgovuk @teamukts, Casgegy is now available on the NHS for people living with Thalassemia!
'Gene therapy would mean a lot to me — it would be a life-changing treatment.' Kirthana has thalassaemia and could be one of the the first people in the world to benefit from a gene-editing treatment that could cure her blood disorder. england.nhs.uk/2024/08/gene-e…
Our beautiful Kirthana ❤️ Kirthana will be featured on BBC later today!
'Gene therapy would mean a lot to me — it would be a life-changing treatment.' Kirthana has thalassaemia and could be one of the the first people in the world to benefit from a gene-editing treatment that could cure her blood disorder. england.nhs.uk/2024/08/gene-e…
NHS to offer ‘life-changing’ gene therapy for blood disorder thalassaemia dlvr.it/TBdxc7
First gene-editing therapy may cure blood disorder; Beta Thalassaemia Major bbc.co.uk/news/articles/…
We are thrilled to share some exciting news! The NHS will soon offer gene therapy to patients over 12 with transfusion-dependent #Thalassaemia, thanks to NICE's groundbreaking recommendation under the managed access agreement! 🌟
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Who to follow
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UK National Haemoglobinopathy Panel
@NatHaemPanel -
Sickle Cell Society
@SickleCellUK -
DrRachelKesse 💙🇺🇦
@DrRachelKesse -
Cooley's Anemia Foundation
@cooleysanemia -
The Red Cell Network
@TRCNHCC -
West London HCC Network
@HCCWestLondon -
Sickle Cell Disease Coalition
@ConquerSCD -
KCLredcell
@KCLredcell -
ASCAT
@ascatconference -
TIF
@thalassaemiaTIF -
Thalassemia Patients Advocacy Group
@pagthals -
Globally Integrated Foundation for Thalassaemia
@GIFTc2c -
UKFHD
@UKFHD1 -
Shobha Tuli
@shobhatuli -
Giselle
@gpadmore1
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