Professor Marie Scully COVID19 & TTP Webinar – 18th May

Announcing: The first ever TTPNetwork Webinar. Monday 18th May, 19:30hrs   Professor Marie Scully discusses COVID19 and TTP Book your tickets here: (click the link) https://ttpnetworkprofscullyttp-covid.eventbrite.co.uk A couple of days before the event you will be sent a Zoom link and code which will give you access to the webinar. Please check your spam folder!…

Advice from TTP Clinical Specialist Nurse Ros Newton

We asked TTP Clinical Specialist Nurse Ros Newton about what patients should expect after leaving hospital and beyond:   How often should patients expect to be seen once they leave hospital and what tests should they expect?     Post-acute episode patients can expect to be seen at least weekly for four weeks, as their…

Kellie’s story

This is me and my story with TTP (hoping this will help anyone who’s new to this situation because we all know how scary this disease can be at first) and to help me to get it off my chest as I haven’t done as of yet. Ok so i was a 25 year old…

COVID19 and TTP Update

Prof. Marie Scully University College Hospital, London 23rd March 2020   I’m sure everyone has heard the PMs speech this evening: stay indoors unless absolutely necessary to travel. From the updated ‘at risk’ groups; patients with rare conditions are considered at risk. TTP is a rare condition but not necessarily at risk. There are 100’s…

Walkers triumph at Bridgathon 2019

London Bridgathon 2019   A glorious warm sunny day greeted almost 70 walkers at the annual London Bridgathon sponsored walk. TTP patients, family and friends got the chance to meet each other and take in the sights of the capital.   Some decided on a gentle stroll with a picnic, whilst others took steps to…

Sanofi Genzyme Study

TTP Network would like to signpost members to a Sanofi Genzyme study which aims to help better understand what life is like after being diagnosed with TTP. We are looking for people with acquired TTP (aTTP) who have experienced an episode in the last 12 months, and for family members or friends of someone with…

IQVIA Patient Study

TTPNetwork has been approached by a research company called IQVIA. IQVIA, a global healthcare research firm, is running a research study to explore the experience of patients receiving infusions as long-term treatment for a condition or disease, or on a continuing basis to prevent a condition or disease from occurring, either at home or in…

Discounts

Next of Kin Some TTP Patients say it causes anxiety to think that they might not be able to communicate about their condition if they become unwell or have an accident. Next of Kin are a long established organisation that operates an ‘emergency service’ for anyone, but can be particularly useful for people with medical…

Ann’s Story

One Year On…   Sitting on the plane yesterday, flying back from Iraq, I vividly recalled a similar, but much longer journey exactly one year before. I am a TTP survivor. I had been helping facilitate a workshop in Guatemala as part of my assignment as a Humanitarian Aid worker. I had never really shaken…