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…

Could you share your story?

Sanofi is a global pharmaceutical company with an interest in aTTP (www.sanofi.co.uk). They are looking for individuals who would be willing to share their story of living with TTP to be used to raise awareness of TTP with policy makers, Members of Parliament, medical professionals and the media. All contributors can remain anonymous, but the…

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…

UK TTP Registry

The United Kingdom Thrombotic Thrombocytopenic Purpura (TTP) Registry   The UK TTP registry, involves all sites treating newly presenting Thrombotic Thrombocytopenic Purpura (TTP). From this registry, important epidemiological data will be obtained. Admission and remission samples will be collected. DNA will be collected and analysed from patients wishing to participate to determine if any link…

Upcoming Event – TTP Bridgathon 2019

London Bridgathon Sponsored walk in aid of TTP Education & Research and related platelet disorders Sunday 15 September 2019   Join us for our annual sponsored walk along the River Thames taking in some of the most iconic sites across the capital and raise funds for TTP Education & Research and related platelet disorders.  …

TTP Buddies Newsletter – December 2018

I want to welcome you all to the first edition of our TTP Buddies newsletter. I have put this together to share the findings from the recent survey and to start a conversation with you all about TTP Buddies. At the TTP Network we are committed to find ways to bring fellow TTP patients together.…

Seeking Your Views: TTP Network Buddy Scheme

TTP Network Buddy Scheme   At TTPNetwork we are committed to improving ways to help fellow TTP patients connect with each other.  Through our facebook group we all have access ‘anytime, anywhere’ to a great way to connect with our wider TTP community. Alongside this we also have our TTP Buddy scheme – ‘TTP Buddies’,…