TTPNetwork Research Results
A couple of years ago some patients from TTPNetwork took part in some research. Here are the results. If you would like to take part in research on TTP pop over to our Research & Study Opportunity page. See results here
Opinion Health Research Study
We have been asked by Opinion Health to invite our French, German and USA based patients to take part in a research study. Please see the attached letter for further information. TTPNetwork will receive a payment for each patient that takes part in this study. Download letter Opinion Health nous a demandé d’inviter nos…
Professor Marie Scully to receive an MBE
TTPNetwork are delighted that Professor Marie Scully has been included in the Queens Birthday Honours and is to receive an MBE for services to blood disorders. This award is well deserved in respect of the ground breaking work during the COVID pandemic. Read the full statement from UCL: https://www.ucl.ac.uk/news/2021/jun/ucl-staff-and-alumni-recognised-queens-birthday-honours Congratulations Prof.…
The Good Grief Trust
A brilliant organisation
Grief & Loss
Many books have been written on how to deal with grief and loss. In our darkest and bleakest moments, we can pick up one of these books and try to make sense of how we should behave or feel following the death of a loved one. We can learn about the process through which…
Groundbreaking discovery
We are proud as punch to see that our Patron Professor Marie Scully has made a groundbreaking discovery in the fight with COVID-19. Here is the article from the Guardian Newspaper dated 13th April 2021: https://www.theguardian.com/society/2021/apr/13/how-uk-doctor-marie-scully-blood-clotting-link-astrazeneca-covid-jab-university-college-london-hospital
Info about TTP and the AstraZeneca vaccine
We know that patients have been concerned about reports that in some rare cases the AstraZeneca (AZ) vaccine has been associated with a blood clotting disorder. We contact our friends at Thrombosis UK to understand if they had any extra information about TTP and risks with AZ vaccine this is what they told us:…
COVID19 and TTP – Vaccine
Prof. Marie Scully University College Hospital, London 22nd December 2020 COVID 19 vaccination and TTP The COVID 19 vaccine is being rolled out and over the next few weeks/months everyone will be called. The majority of patients should have it when offered-currently there are 2 doses. There are a few considerations for patients with…
TTPNetwork’s response to the NICE Decision on the use of Caplacizumab in the treatment of TTP
Update 16th December 2020 The Final Guidance has now been published on the NICE website: www.nice.org.uk/guidance/TA667 TTPNetwork’s response to the NICE Decision on the use of Caplacizumab in the treatment of TTP Nice have today published the following decision: Caplacizumab with plasma exchange and immunosuppression is recommended, within its marketing authorisation, as an option for…