About Us

TTPNetwork is a registered charity based in the UK.

What we do

TTPNetwork is the UK's primary patient support group for patients diagnosed with Thrombotic Thrombocytopenic Purpura (TTP).

We provide advocacy, information and support for patients and their families, and we offer support to health care professionals.

We are UK based and our support is for those in the UK and Ireland, but our reach is far wider.

We are a key voice in the public health sector and regularly work with other stakeholders to improve knowledge and services for TTP patients.

We are committed to ensuring patients with TTP receive the best care available to them and the peer support they require to help understand and live with their diagnosis.

Information

Advocacy

Peer Support

Our History

TTPNetwork was established as a not-for-profit in May 1998 by a patient who had been diagnosed with TTP and who at that time had experienced an initial episode and one relapse.

In the early years TTPNetwork sent paper newsletters and ran an online discussion forum.

Patients and their families kindly donated stamps, paper and envelopes to help the small following of patients with TTP and their families to receive news and information.

A website was later developed and this allowed information to reach a wider audience. Facebook also became a useful tool for keeping in touch with patients.

TTPNetwork was a key stakeholder in the development of the National TTP Service Specification and the NHS England commissioning of TTP Specialist Centres.

In 2021 TTPNetwork became a registered Charity and work to support patients continues.

Our Patron

Professor Marie Scully MBE

We are privileged and honoured to have Professor Marie Scully, as our Patron.
‍Professor Scully is an inspirational Consultant Haematologist at University College London.

Prof. Scully has been an unwavering champion of TTPNetwork for many years and her invaluable support has made a huge impact on raising awareness of our work and the information and support we have been able to offer patients and their families.

Our Impact

25yrs

since May 1998

for 25 years TTPNetwork has been the primary peer support for patients

900

patients/families

TTPNetwork supports over 900 people via our Facebook platform, website and email.

Testimonials

"TheTTPNetwork has been a guiding light since my diagnosis, helping my family and I navigate a scary world that so few understand."

- Sophie

"I was lost and lonely but TTPNetwork gave me hope and a sense of belonging. This makes a big difference to my wellbeing."

- Senzeni

“Hugely helpful, informative and supportive; especially when I needed help to navigate the NHS on my return to the UK."

- Helen

“Such a relief to know I wasn't alone”

- Christine

“so helpful when I needed it”

- Anonymous

“clear information that helped me understand my condition”