TTPNetwork is the UK's primary patient support group for patients diagnosed with Thrombotic Thrombocytopenic Purpura (TTP).
We are registered charity based in the UK. Charity number: 1195109
Our Mission: To improve outcomes and quality of life for patients and families affected by TTP through support, education, and advocacy.
Our Vision: No patient or person affected by TTP will feel alone
We will do this by:
Providing accessible and accurate information about TTP so people can better understand the condition and get the right care.
Supporting patients by listening, facilitating peer to peer support, and providing practical resources throughout their TTP experience.
Advocating with and for patients to promote awareness, education, research, and equitable access to the best possible care for all those affected by TTP
Influencing healthcare policies, research priorities, and clinical practices to ensure the voices of TTP patients and their families are heard.
Engaging with patients, families, healthcare professionals, and the broader community to achieve improved health outcomes together.
TTPNetwork provides trusted information, practical support and advocacy for people affected by TTP, as well as resources for families and healthcare professionals.
Although we are a UK charity supporting people across the UK and Ireland, we also work with partners nationally and internationally to improve understanding of TTP and share good practice.
We work collaboratively with clinicians, researchers, NHS organisations, industry partners and other stakeholders to ensure that the experiences and priorities of people living with TTP help shape services, education, research and access to treatment.
Everything we do is guided by our commitment to helping people affected by TTP receive the best possible care, while ensuring that no one has to face their diagnosis alone.
We are committed to delivering a high-quality service and continually looking for ways to improve.
If you feel we have fallen short of the standards you expect, we welcome your feedback. Our Complaints Policy can be found at the bottom of this page, together with details of how to contact us.
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.
for over 27years TTPNetwork has been the primary peer support for patients
TTPNetwork supports over 1000 people via our Facebook platform, website and email.
Are you a TTP patient? Or perhaps a family member or close friend of someone diagnosed with TTP?
Are you a healthcare professional who wants to know more about our work?
Whoever you are, get in touch. We'd love to hear from you.
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