The Good Grief Trust
A brilliant organisation
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…
Management of thrombotic microangiopathy in pregnancy and postpartum: report from an international working group
Pregnancy and postpartum are high-risk periods for different forms of thrombotic microangiopathy (TMA). However, the management of pregnancy-associated TMA remains ill-defined…
Cerebral MRI findings predict the risk of cognitive impairment in thrombotic thrombocytopenic purpura
Thrombotic thrombocytopenic purpura (TTP) is a rare thrombomicroangiopathy caused by deficiency of ADAMTS13. Acute neurological involvement is well described, but its long‐term impact requires evaluation. One‐hundred thirty‐one patients, following an acute TTP event, with severe headache or neurological symptoms had a cerebral MRI…
TTPNetwork Webinar 5 – Prof. Scully: TTP the low down October 6th 2020
Webinar 5 of the COVID Lockdown series. Professor Scully gives us the low down on TTP and answers patient questions. This recording has been edited at the request of Prof. Scully.
TTPNetwork Webinar 4 – CNS Joanne Bell 3rd Aug 2020
CNS Jo Bell, the role of the Clinical Specialist Nurse for TTP.
TTPNetwork Webinar 3 – Prof Marie Scully 30th June 2020
This is the 3rd Webinar in our series. Professor Scully talks about Research and Clinical trial in TTP in the context of TTP in the UK.