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’,…

NHS TTP Patients Consultation

NHS TTP Patients Consultation   Date: Commencing 7th September 2018   NHS England are looking at creating specialist treatment Centre’s across England for patients experiencing TTP.  The public are invited to respond to the consultation.   Please invite your friends and family to comment if they wish to.  Please also share with any fellow TTP patients.…

TTP Bridgathon 2018: A Great Success

A great turnout for London Bridgathon 2018   Over 70 people joined the annual sponsored walk covering some of London’s most iconic sites. The walkers received a T-Shirt and walking map then headed off to enjoy the lovely sunshine and sites. Some of them including the four legged variety who seemed to love the attention…

Event – TTP Education & Research Patient Day

TTP Education and Research Patient Day   Saturday 6 October 2018 – Save the Date   The TTP Patient Day will include guest speakers, a buffet lunch and an opportunity to meet other patients. There will also be the chance to put forward your questions to a panel of speakers and get the latest information about TTP…

Upcoming Event – TTP Bridgathon 2018

Sponsored walk in aid of TTP Education & Research and related Platelet Disorders   Date: Sunday 16 September 2018 Time: Registration 11am-11.45am (group photo at 11.45am.  Walk will start at midday) Location: Vauxhall Park, Lawn Lane entrance (South Lambeth Road), SW18 1GA (nearest tube Vauxhall Station)   Please join the TTP Medical Team, TTP Patients…

Jamie’s Story

Hi, my name is Jamie and I was diagnosed with TTP in July 2016. At the time I was 44 years of age and in what I thought relatively good health. I first noticed discolouration to my feet and legs which at first I thought was the beginnings of an infection in my eczema on…

Houda El-Houry Webster

Houda was born in Lebanon and was diagnosed with lupus when she was only nineteen years old.  She never ‘suffered’ with the disease.  Instead, she probably lived life more fully because of it. She loved to travel and would always make the most of the moment she was in.  We never even knew she was…

Support This Site & Help Keep Us Running

On 11th May 2018 we celebrate 20 years since a small article in a UK Womans magazine asking if anyone had heard of TTP and from that article the TTPNetwork was born!   Since the early days we had a website but in recent years as technology has moved on we have needed to pay to…

TTP London Bridgathon

Another great day for TTP London Bridgathon   Over 90 people took part in the 2017 sponsored walk to raise funds for TTP Education & Research. Despite the forecast for rain, the weather was fine and there was every age group represented from toddlers in prams to pensioners, with even a couple of our four…

Travel Translation Documents

TTP patients often worry about travelling abroad and what would happen with their treatment if they had a relapse or felt unwell in a foreign country. The first letter below, in English, can be used to give to a hospital or doctor in this country and often abroad, however, it has also been translated into…

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…

Gemma’s Story

Saturday 20th August 2005 was like any other day, apart from the fact that my husband and I were going on holiday to Spain. Our daughter Gemma had kindly offered to take us to the Airport. We were due to leave home around 6:15am and as usual it was a bit of a struggle getting…

Jo’s Story

In 1995, aged twenty-four, Jo M. was diagnosed with a rare blood condition Thrombotic Thrombocytopenic Purpura or TTP. Jo felt lonely and confused and wanted to speak to others who had been in a similar situation. She quickly found that as the condition was so rare, there were no support groups or opportunities to contact…