ITP Support Association

01/11/2026

ITPSA Patient Perception Survey 2026
A fantastic response after only a few days, almost 100 surveys completed.
Please give us your response about the level of care received at their ITP Centre, Hospital Haematology Department or GP Surgery and their perception of how ITP affects daily life. Your answers will be kept confidential – only the result summaries will be published.
The survey will take around 15 minutes to complete.
To take part in the survey you can scan the QR code in the image above or click this link: https://www.surveymonkey.com/r/6R5MZVR

30/10/2026

This recording features the England and Wales ITP Support Group Meeting, held on Thursday, 29th October 2026, with Professor Adrian Newland and Mervyn Morgan (ITPSA CEO.
The meeting focused on discussing various aspects of ITP (Immune Thrombocytopenia), including its management, treatment options, and potential side effects. Participants explored different medical approaches and shared personal experiences.

This recording features the England and Wales ITP Support Group Mee...

30/10/2026

🎥 New on YouTube: Developments in ITP from the UK Adult ITP Registry

For more than 20 years, the UK ITP Registry has been building one of the most valuable pictures of real-life ITP anywhere. Dr Fred Chen, Consultant Haematologist at Barts Health NHS Trust and the Registry's Chief Investigator, shared the latest findings at this year's Convention.

A few highlights:

📊 Over 6,200 patients recruited from 120 hospitals across England, Scotland, Wales and Northern Ireland
💊 A big shift in second-line care: before 2000 most people went on to have a splenectomy, while in the last decade around three quarters received a TPO-RA
🧪 Romiplostim worked equally well whenever it was started, but responses tended to last longer when it was started early
🩺 During COVID, people given romiplostim alongside steroids had longer-lasting responses than those given romiplostim alone, which points towards more individual treatment in future

This is what real-world data can do, and it only exists because patients agree to take part. We're proud to support the Registry directly.

▶️ Full lecture: https://youtu.be/8CcIDmBbvRQ

These findings are research, not a reason to change your own treatment. If they raise questions, talk to your haematologist.

29/10/2026

Please give your support to Leena in the 2027 Great North run as she raising money for the ITP Support Association.

The North East’s premier 10k running event takes runners on a tour of the Tyne, along the stunning Newcastle–Gateshead Quayside, and an iconic finish inside Gateshead International Stadium. Renowned f

29/10/2026

ITPSA Patient Perception Survey 2026
We are pleased to open our 2026 ITP Patient Perception Survey, we are now inviting feedback from ITP Patients and Care Givers about the level of care received at their ITP Centre, Hospital Haematology Department or GP Surgery and their perception of how ITP affects daily life. Your answers will be kept confidential – only the result summaries will be published.
The survey will take around 15 minutes to complete.
To take part in the survey you can scan the QR code in the image above or click this link: https://www.surveymonkey.com/r/6R5MZVR

28/10/2026

📅 Save the date: ITP Annual Patients' Convention 2027

Enjoying the Convention lectures this month? Next year's event is already in the diary.

🗓️ Saturday 15 May 2027
📍 Cavendish Conference Centre, London

It's a chance to hear directly from leading ITP specialists, ask your own questions, and meet other people who truly get it. Ticket details will follow soon, so keep an eye on our page.

Tag someone you'd love to bring along 👇

23/10/2026

🎬 Meet Mike Ravenscroft, Clinical Operations Manager at Fortrea's clinical research unit in Leeds.

Mike and his colleagues came to this year's Convention to talk about one of their current studies in ITP, and to meet our community face to face. He brought Dr Jim Bush and Dr Jon Ackroyd with him, along with a patient who has taken part in the study and could talk honestly about what it was actually like.

That last part matters. Knowing what a trial involves day to day is often the thing that helps people decide.

Their current ITP study involves a six-night stay, 11 outpatient visits and one follow-up call, and it's running at sites in Leeds, Nottingham and Oxford.

Interested? Full details here: https://www.fortreaclinicaltrials.com/en-gb/clinical-research/780567-patients-diagnosed-immune-thrombocytopenic-purpura-itp-needed

Taking part in research is always your choice, and it's worth talking it through with your own haematologist first.

21/10/2026

🎥 New on YouTube: New developments in ITP

If you've ever wondered what's coming next in ITP treatment, this is the one to watch. Professor David Kuter of Massachusetts General Hospital explains how ITP works in the immune system, then walks through the new approaches being studied, many of which aim to stop harmful antibodies at their source.

He covers B cell targeting (including ianalumab), plasma cell targeting with CD38 antibodies such as mezagitamab, FcRn inhibitors that lower antibody levels, SYK and BTK inhibitors, and early research into 'immune reset' approaches like CAR T and T cell engagers.

Many of these are still in clinical trials and aren't routinely available yet, but it's genuinely hopeful viewing.

▶️ Full lecture: https://youtu.be/KAflx7ey8sA

Interested in taking part in research? See the trials currently listed on our website.

19/10/2026

📖 Living With ITP: the basics. Getting the most from your appointments.

Hospital appointments can fly by, and it's so easy to walk out and remember the one question you meant to ask.

This week's excerpt from our patient guide is all about working with your medical team. The book puts it simply: the word TEAM is crucial. Whatever your team knows about ITP, you're the only person who knows how you feel and what matters to you.

Swipe through for practical tips on notebooks, symptom diaries, bringing someone along, and Shared Decision Making 👉

📖 Read the full book free, or request a printed copy: itpsupport.org.uk/living-with-itp-book/

16/10/2026

🧾 ITP jargon buster: TPO-RA

If you've been watching our Convention lectures this month, you'll have heard this one a lot. So what does it actually mean?

TPO-RA stands for thrombopoietin receptor agonist. Most ITP treatments work by calming down the immune system so it destroys fewer platelets. TPO-RAs do something different. They encourage your bone marrow to make more platelets in the first place.

There are three in use: romiplostim, given as a weekly injection, and eltrombopag and avatrombopag, both daily tablets. Your team will discuss which might suit you best, and you'll have regular blood tests at the start to check your count doesn't climb too high.

You might also hear them called TPO mimetics. Same thing.

Save this one for your next appointment 💜

Which term should we explain next? Tell us below 👇