About Us

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.

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.

Meet the Trustees

Our trustees combine lived experience of TTP with professional expertise, guiding our work and keeping the charity focused on supporting the TTP community.

Julie Hallam

Julie became aware of the network when diagnosed with TTP in January 2022. She is a patient at the Birmingham Specialist Centre.
Julie has recently retired after 36 years as a teacher and Assistant Headteacher in Birmingham primary schools ; this has given her time to try to give something back to the network that was so useful to her.

Saida Ladha

TTP patient and a volunteer of TTPNetwork since 2014. Saida has a background in marketing, events, filming and business development in the public and private sector. Saida currently works for local government in London.

Catherine Howell OBE

Catherine retired from the role of Chief Nurse for Diagnostic and Therapeutic Services at NHS Blood and Transplant in 2021. She has extensive experience in the field of transfusion leading the set up and delivery of therapeutic services, including plasma exchange, in England. She is now working as an Independent Healthcare Consultant which involves her working with other Blood Services including New Zealand.

Kiran Grewal

Kiran is an experienced programme director and has worked for blue chip companies in a variety of industries in the UK and internationally. She takes a structured and methodical approach to her work ensuring focus on the big picture and with her extensive corporate experience is comfortable getting into the many different aspects of business operations and management. Kiran has had TTP twice and received elective treatment several times. As a patient and with her large corporation experience, her role as a trustee is to ensure the charity remains forward looking and is delivering effectively against its strategic and operational objectives.

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.

About Us

What we do

Information

Advocacy

Peer Support

Our History