Shop & Donate to the UKTS With Amazon



UKTS family conferences  


More information will follow shortly; but please note these dates in your diary –

 

For families based in London and the South of England – Saturday 10th March 2018 (London)

 

For families based in the North and Midlands – Saturday 14th April 2018 (Leeds)


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 prevent people from getting necessary medication


A third of people living with long-term conditions and currently paying prescription charges have not collected their prescriptions due to concerns over cost, according to a new report released today (29 June 2017) by the Prescription Charges Coalition, a coalition of more than 40 major health charities.


If anyone has a story they would be prepared to share with the colition then  please contact mhorsburgh@parkinsons.org.uk and/or ewebb@parkinsons.org.uk 


  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. 

More

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

Get Social with Us


Make sure you get the latest information by following us on Twitter.


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