Thalassaemia Conference & AGM

Dear Members,

We are extremely excited to invite you to the UKTS’ first Patient and Parent Conference for 2020!

Based on feedback from previous events, this conference aims to tackle challenges facing people with thalassaemia and discuss the new treatment options that is currently being trialled in the UK!

The programme includes :

      • Heart Health in thalassaemia
      • Bone disease in thalassaemia
      • An update in new therapies
      • Psychosocial aspects of living with thalassaemia
      • Current issues regarding Personal Independent Payment (PIP) applications and a lot more.

In order to attend this event, you need to rsvp by either email or phone. Spaces are limited so please get in touch with us as soon as possible to avoid any disappointment!

#thalassaemiamatterstoo   #thalassaemia2020

Registration

Sickle cell and thalassaemia screening

SICKLE CELL AND THALASSAEMIA SCREENING

Screening is the process of identifying people who appear healthy but may be at increased risk of a disease or condition.

Healthcare professionals will offer information, further tests and appropriate treatment to reduce their risk or any complications arising from the disease or condition.

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Panel 1

Parents’ Stories

In March 2015 the Sickle Cell and Thalassaemia Screening Programme Advisory Group set up a sub group to focus on the timeliness of antenatal screening and prenatal diagnosis. The subgroup included parents of children with sickle cell disease and thalassaemia, representatives from UKTS and the Sickle Cell Society and representatives from midwifery, obstetric and genetic counselling professional organisations.

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Panel 2

Latest News

Panel 3

Hepatitis C Coalition

The Hepatitis C Coalition is a group of leading clinicians, patient organisations and other interested parties committed to the reduction of morbidity and mortality resulting from hepatitis C, and the eventual elimination of the virus.

Some 214,000 people in the UK are thought to be living with chronic HCV. Many of these do not know that they have the virus and at present only 4% of those chronically infected receive treatment each year – an unacceptably low number.

Yet with the right diagnosis and treatment, HCV is curable, thanks to new therapies that are now available. Research from the London Joint Working Group on Substance Use & Hepatitis C (LJWG) found it was cheaper to treat chronic hepatitis C virus (CHCV) than to allow the disease to progress, and that treating just 10% of those people with HCV could save £200 million in London alone.

Panel 4

Getting Social