Celebrating our 40th Anniversary


Be part of our Gala Dinner and Awards Cermony at the London Hilton on Park Lane. As part of the celebration we want you to nominate your hero.


Find out more about the Gala Dinner


Download the Nomination form

 

Shop & Donate to the UKTS With Amazon


The UK Thalassaemia Society would like to thank all members and well-wishers for taking the time previously to Amazon UK, via our website. We recognise that this was problematic especially for those now using the Amazon app. We are happy to announce that with the new smile.amazon.co.uk incentive you are now able to list us as your preferred charity from March 1st, 2018 and any future purchases will be automatically included in the incentive. So please ensure that you visit the website and choose us…then happy shopping!

Show me How


Brand new publication “Parents’ Stories”  


Read about the personal experiences of the NHS Antenatal Sickle Cell & Thalassaemia Screening programme, from women and couples at risk of having a baby affected by one of the conditions.


Read the full story


4 October 2017 – “NHS Sickle Cell & Thalassaemia Screening Programme releases updated screening guidelines for counselling and referral for prenatal diagnosis” 


Cost of prescriptions prevents people from getting necessary medication


As most of you will know, the UK Thalassaemia Society belongs to the Prescription Charges Coalition, an alliance of charities campaigning to abolish prescription charges for all people living with long term medical conditions. Please help us in our campaign by signing the petition – just click on the SIGN OUR PETITION link at the bottom of this email. Thank you for your help and best wishes, Elaine.

 

Everyday across England, people with long-term conditions are faced with the difficult choice between buying food, turning on their heating or paying for their medication.

We’re calling on the government to make prescription charges free for everyone with long-term conditions. 


A big price to pay

Prescriptions are currently charged at £8.60 per item and set to increase to £8.80 in April 2018. For people that require several medications a month the cost is an enormous burden to bear. A third of people told us that they have not collected a prescription due to the cost. This can result in avoidable GP and hospital visits and more importantly it can have a severe impact on their health.


Out of date and unfair

The list of conditions that do not pay for prescriptions will be 50 years old in June, and remains largely unchanged in England. To mark its anniversary, we are launching a petition calling on the government to update it to include all people with long-term conditions.

We don’t believe that anyone with a long-term condition should have to pay for life-saving medication. 

SIGN OUR PETITION

 


  Read the press release.

  

  Read the full report. 


Standards for the Clinical Care of Children and Adults with Thalassaemia in the UK


Newly published 3rd Edition of the standards (May 2016)

Clinicians embracing these standards will see improvements in their services and the Peer Review process is also key. This document should be an invaluable source of information to commissioners when developing future services for patients. Well done to the Editor and authors. This is an important piece of work.


 Professor Dame Sally C Davies FRS FmedSci


UKTS Standards Web Site


Are you a thalassaemia patient who is affected by Hepatitis C?


UKTS currently knows of only a handful of thalassaemia patients who are affected by HCV but we are aware that there may be more unknown to us. If you are a thal patient who has HCV and would be prepared to share this information. Please contact me elaine@ukts.org and let me know, so I can have some idea of the number of patients who are affected. I can also then ensure that I forward on any relevant information and publications to you in the future. Please rest assured that any information you send will be treated with absolute confidentiality.


Hepatitis C Paitents Conference Programme 2017


Hepatitis C Information

Hepatitis C is a viral disease which affects the liver. It can go undetected for years, during which time it can cause significant damage... 


Find out more and about or work with the Hepatitis Coalition here


Hepatitis C Position Paper

Thalassaemia International Federation's final position paper on Viral Hepatitis C in Thalassaemia - 2015.


Download the paper


Preimplantation Genetic Diagnosis (PGD) 


PGD started nearly 25 years ago and thousands of babies have been born worldwide since then. In our centre we have been offering PGD to couples at risk of having children with serious genetic disorders since 1997 and are now in our 17th year of service. Over that time there have been many changes to what is offered and a significant increase in the number of referrals and PGD treatment cycles. Read More


Give a little

We dont need the iron but we need your silver. By donating just a few pounds a month you help us to continue funding research into this potentially deadly condition which affects children and adults throughout the U.K. 


Donate via the web, sms text or our on-line shoping portal. 

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Videos 'n Stories

A selection of educational videos for parents, patients and health care professionals. 
Real life stories from carriers, patients and carers who give their account of what sickle cell or thalassaemia means to them.


Watch the films

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Dont forget we want to hear from you, tell us your news. 

Library & Video Section

Check out the new video section in the library.   More