UK Thalassaemia Society

We support families & professionals, educate, campaign for change & fund research.

[The Red Cell Network @TRCNHCC]

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:
https://t.co/O3FXPB1AXE

[UK Thalassaemia Society @teamukts]

@VikramSinai Thank you so much for your presentation! As always you were exceptional!! ❤️

[Red Cell Pain @PmpRed]

Come & work with us! Part-time band 7 clinical/counselling/health psychology post in #sicklecell & #thalassaemia
https://t.co/fCGy99E3Ir
Creative and flexible work in a lovely team where psychology is really valued @docesr @StGeorgesTrust @SickleCellUK @teamukts @HCCWestLondon

[The Red Cell Network @TRCNHCC]

We are excited to be running a series of Menopause Awareness Sessions with an exclusive focus on Thalassaemia.

Starting October 16th
Sign up https://t.co/ySmZW5hniW

We are teaming up with @VikramSinai and Babita from New Chapter Nutrition for Menopause!
@teamukts
@HCCWestLondon

[UK Thalassaemia Society @teamukts]

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 [email protected] to register!

[UK Thalassaemia Society @teamukts]

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 [email protected] to register!

[UK Thalassaemia Society @teamukts]

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

[Parikiaki Newspaper @Parikiaki]

Islington vision for a greener, healthier area between Nag’s Head to York Way recently became a reality!
https://t.co/8f6BoWIWwb to offer ‘life-changing’ gene therapy for blood disorder thalassaemia
https://t.co/bt3y3UjkPM
#Thalassaemia @teamukts

[UK Thalassaemia Society @teamukts]

@Faisalnaifaru Hello, it won’t (at least not anytime soon) , in fact the NHS will also be offering HSCT transplants to adults with TDT. Exa-cel will only be offered to people who are well enough and do not have a matched donor.

[UK Thalassaemia Society @teamukts]

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! 🌟

[Sarah Nicolle (she/her) 💙🌈🎵 @DocCSarah]

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!!!

[Bambos Charalambous @BambosMP]

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

[Bola Owolabi @BolaOwolabi8]

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!

[UK Thalassaemia Society @teamukts]

Our beautiful Kirthana ❤️

Kirthana will be featured on BBC later today!

[NHS England @NHSEngland]

'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. https://t.co/LIhULeGEio

[Guardian news @guardiannews]

NHS to offer ‘life-changing’ gene therapy for blood disorder thalassaemia https://t.co/aXc5e35yl7

[UK Thalassaemia Society @teamukts]

First gene-editing therapy may cure blood disorder; Beta Thalassaemia Major

https://t.co/fdipGHxh86

[UK Thalassaemia Society @teamukts]

Diversity is vital to our charity & nation.

#teamukts condemns the recent rioting & stands against any prejudice advocating for inclusion & equality.

To our families affected by #thalassaemia, hcps, blood donors & neighbours remember, you are seen, heard & valued ❤️

[George Woodward @georgedwoodward]

Very proud that finally our 3 year campaign to ensure there is up-to-date VTE anticoagulation guidance for patients with sickle cell and Thalassaemia with venous access devices is here! @redcellemma @_JohnBrewin https://t.co/f7e7Z7AQYE @ThrombosisUK @BritSocHaem @SickleCellUK