Thank you for visiting the EMSTN website and welcome to our Patient and Family information area.
We hope that the information will be informative and helpful.
Please help us to improve this page by giving us your comments and feedback, for example any topics or information you would like us to include.
Please note we will be unable to reply to individual comments, and this page must not be used for any questions regarding medical care. You must speak to your medical team directly via the usual route.
2nd December 2022
2nd December 2022
Essential Facts for Transplant Patients – Information Booklet
15th November 2021 – No One’s Listening
Many of you will have seen the publication of this through the national media. It is a difficult read, and some of you may even recognise some of the experiences described within the report. While the inquiry did find that specialist haemoglobinopathy services are generally felt to be of a good standard, the report shows that this is not always the case on general wards or A&E departments. As a network we are devoted to working with colleagues from other hospital departments to raise the standard of care for patients with Sickle Cell, Thalassaemia and Rare Anaemias as well as continuing to address any challenges we may face in our own services in order to deliver the care that we feel patients deserve.
5th October 2021 – Crizanlizumab – A simple guide
18th February 2021 – Care Information – Pill taking tips
19th October 2020 – National Thalassaemia Day
Today is National Thalassaemia Day here in the UK and we wanted to commemorate this by highlighting the following resources available to learn about this rare but important lifelong condition. More information can be found on the UKTS website
Attached is our new look update in the form of a newsletter, this week we have information about National Thalassaemia Day, the infected blood inquiry, London marathon, face coverings, fundraising and of course an update and recipe from Zoe. Please do let us know what you think of the new format. We hope you enjoy … Continue readingUKTS National day
5th November 2020 – Research Opportunities
NHS Blood and Transplant are working with clinical teams to learn more about blood transfusion in sickle cell disease. They are looking to set up a patient participation group, to work with the clinicians to learn more with the aim to improve patient care. More information can be found in the documents below, but if you are interested please contact the team on srf42@medschl.cam.ac.uk
20th November 2020 – Changes to the National Haemoglobinopathy Register
emstn.org 