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ITP Support Association

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ITP Support Association

Formed in 1995 an independent UK registered charity which promotes & improves the general welfare of people with Immune Thrombocytopenia

01/06/2026

Myth vs. Fact: Understanding ITP Counts 🩸

When you are living with ITP, seeing your platelet numbers climb back into the ""normal"" range is always a reason to celebrate. However, a common misconception is that hitting that target means the condition has completely gone away.

For many adults and persistent cases, ITP is a chronic or relapsing condition. A stable count today is brilliant news, but it does not mean the underlying autoimmune response has vanished permanently. Managing ITP is about long-term wellbeing, trackability, and lifestyle balance, which is why ongoing monitoring with your haematologist is so important.

29/05/2026

Year in Review: A 30th Birthday Reflection 🎂💜
Turning 30 is a landmark that often sparks reflection, and for ITP survivor Adam Metcalfe, it was a moment to acknowledge a life-changing event from his childhood.

Approaching his 4th birthday, Adam contracted an aggressive strain of ITP that led to significant blood loss and required an emergency platelet transfusion to save his life. Now, three decades on, he is using his milestone year to give back to the community and ensure that this "little-known disease" is discussed.

Adam’s Year of Awareness:

Fundraising: He completed the Great Manchester Run to raise vital funds for the ITP Support Association.

Giving Back: He donated blood in honour of the emergency transfusion that saved him as a child.

Speaking Out: Adam has taken to various panel talks to share his story and educate others on what it means to be an ITP survivor.

Living with the "Badge of Honour"
Adam continues to live with daily side effects, including fatigue, a weakened immune system, and easy bruising. However, he views these symptoms as a blessing—a reminder that he is a survivor.

As Adam says, "Discussion equals awareness which then equals understanding." Whether you are a fellow survivor or newly diagnosed, Adam’s story is a powerful reminder of the resilience within our community.

📖 Read Adam’s full "Year in Review" on our blog: https://itpsupport.org.uk/year-in-review-by-adam-metcalfe/

27/05/2026

1 Month to Go! | London 2026 🗓️

The countdown has officially hit the final stretch. We are just one month away from the ITP Annual Patients’ Convention on Saturday, 27th June 2026.

We’ll be gathering at the prestigious Royal College of Pathologists in London for a day dedicated to the ITP community. From world-class medical insights to the chance to meet others walking the same path, this is the event of the year for ITP patients and their families.

What to expect in 30 days:

Global Expertise: Hear from specialists like Dr Cindy Neunert (New York) and Dr David Kuter (Boston), alongside our leading UK experts.

Practical Advice: Sessions on starting treatments, managing side effects, and the latest research from the Adult ITP Registry.

Personal Connection: Our popular breakout sessions for adults, adolescents, and parents offer a safe space to share stories and advice.

Full Hospitality: Your ticket includes a full lunch and refreshments throughout the day, providing plenty of time to chat and recharge.

If you’ve been thinking about joining us, now is the time to secure your place. We can’t wait to welcome you to London for a day of support, learning, and community.

🎟️ Book your tickets here: https://bit.ly/49AlNZJ

25/05/2026

We are delighted to have Dr John Grainger joining our expert line-up at the 2026 ITP Annual Patients’ Convention!

Dr Grainger is a leading figure in UK haematology, serving as the Chair of the British Society of Haematology Paediatric Haematology committee and the national lead for paediatric ITP. As a long-standing Medical Advisor for the ITPSA, his expertise in paediatric care and IVIg treatment has been invaluable to our community.

Connect with Dr Grainger:
10:35 AM – 11:30 AM | Breakout Session: Women & Children 👩‍👧‍👦
Dr Grainger will be co-leading this dedicated breakout session alongside Dr Cindy Neunert and Dr Nikki Cooper. This is a unique, informal space designed for parents, children, and female patients to discuss their specific experiences and get expert guidance in a smaller group setting.

Whether you are a parent navigating a new diagnosis or a long-term patient, Dr Grainger’s wealth of knowledge makes this a must-attend session.

🎟️ Secure your place in London on June 27th: https://bit.ly/49AlNZJ

22/05/2026

Summer Holidays: Staying Safe in the Sun ☀️✈️

As we approach the holiday season, many of us are looking forward to some well-deserved Vitamin D. However, if you are planning a trip to a tropical destination, there are some extra considerations for the ITP community beyond just packing your bags.

A 2026 review article highlights the complex relationship between tropical diseases and platelets.

Why Travel Awareness Matters:

Infection Risks: Common tropical infections like malaria and dengue are notorious for causing thrombocytopenia (low platelets). In fact, up to 85% of patients with acute malaria experience a drop in counts.

The "Double-Edged" Platelet: While platelets are essential for clotting, they also act as antimicrobial cells that help your body fight these infections directly.

Diagnosis Aid: For doctors, a sudden drop in platelets is often used as a key indicator to help diagnose malaria or dengue in returning travellers.

Top Tips for ITP Travellers:

Bug Prep: Use high-quality insect repellent and nets. Preventing bites is the best way to avoid infections that could further complicate your ITP.

Know the Symptoms: If you return from a tropical area and feel unwell or notice new bruising, seek medical advice immediately and ensure you mention your ITP history.

Flying with ITP: Most patients can fly safely, but it’s vital to discuss your counts with your haematologist before you go.

Read more here:https://itpsupport.org.uk/wp-content/uploads/2026/01/Thachil-thrombocytopenia-in-tropical-diseases-2026.pdf

21/05/2026

Speaker Spotlight: Dr Alice Hart 🩺

We are thrilled to welcome Dr Alice Hart to our 2026 expert panel!

Dr Hart is a Consultant Haematologist at Imperial College Healthcare NHS Trust and a leading researcher in immune haematology. Having completed her PhD at Imperial, she has dedicated much of her work to understanding the "hidden" side of ITP - specifically how it affects quality of life, fatigue, and cognitive function in younger patients.

As a co-investigator in both paediatric and adult clinical trials, Dr Hart brings a wealth of knowledge on the latest treatment pathways and the long-term impact of living with the condition.

Where to find Dr Hart at the Convention:
10:35 AM – 11:30 AM | Breakout Session: Adults & Adolescents 👥
Join Dr Hart alongside Dr David Kuter and Professor Catherine Bagot for an informal, deep-dive discussion. This is your chance to ask questions about treatment trends and managing life with ITP in a smaller group setting.

14:20 PM – 14:45 PM | Adolescence: Coping with ITP 🎓
In this dedicated session, Dr Hart will explore the specific challenges faced by teenagers navigating ITP. From school life to emotional wellbeing, she will share practical advice on coping with the condition during these pivotal years.

Dr Hart’s focus on the patient experience makes her sessions a highlight for anyone looking for a holistic approach to care.

🎟️ Join us in London on June 27th: https://bit.ly/49AlNZJ

20/05/2026

A New Story for ITP Children 📚💜

We are thrilled to share some wonderful news from our community! One of our own has created a beautiful picture story book detailing her personal journey of being diagnosed with ITP at just eight years old.

For many families, a childhood diagnosis is a terrifying time filled with uncertainty. This book was written to offer a "fun but educational" way to explain the condition to children, while providing much-needed comfort and hope to parents.

Why this book is a must-read:

A Story of Hope: The author, who once lived with zero platelets and extensive bruising, is living proof that children with ITP can go on to lead healthy, happy, and "normal" lives.

Invaluable Resource: As shared by Elizabeth, mum to 14-month-old ITP warrior Brianna, the book helps children feel "heard, seen, and understood" during their journey.

Raising Awareness: Childhood ITP is rare, affecting approximately 4–5 per 100,000 children. Stories like this are vital for spreading awareness and building a supportive community.

Whether you are navigating a new diagnosis or want to help your child understand their "spots and bruises," this story is a powerful tool for the bookshelf.

Let’s help spread awareness together! You can find the link to purchase your copy here: https://www.amazon.com/dp/B0GSN8P7S7

18/05/2026

Speaker Spotlight: Mervyn Morgan 🎙️🌍

We are kicking off the 2026 ITP Annual Patients’ Convention with a warm welcome from our very own CEO, Mervyn Morgan!

Mervyn has been the driving force behind our Patient Conventions since 2016, ensuring that the community has a dedicated space to learn and connect. His work extends far beyond the UK; as a board member of the ITP International Alliance, he collaborates with global experts to co-author vital ITP resource materials and research abstracts.

Don’t Miss the Opening:
10:00 AM – 10:10 AM | Welcome and Introduction 📢
Mervyn will be opening the day’s proceedings at the Royal College of Pathologists, setting the stage for a day filled with expert insights and community support.

From local support to international advocacy, Mervyn’s dedication to the ITP community is at the heart of everything we do. We can’t wait to see you all there for the start of what promises to be an incredible day!

🎟️ Final tickets available here: https://bit.ly/49AlNZJ

15/05/2026

A diagnosis can feel like everything is changing, but as one member shared, life really can start to feel normal again.

Between improved treatments and a better understanding of the condition, management is often easier than that first shock suggests.

What’s your advice for the newly diagnosed? 👇

14/05/2026

Speaker Spotlight: Professor Guillaume Moulis 🇫🇷🩺

We are delighted to welcome Professor Guillaume Moulis to the 2026 ITP Annual Patients’ Convention!

Based in Toulouse, France, Professor Moulis is a leading specialist in Internal Medicine and Clinical Immunology. He serves as the head of the referral centre for autoimmune cytopenias at Toulouse University Hospital, where he provides dedicated care for patients with ITP and other platelet disorders.

Beyond his clinical work, Professor Moulis is a renowned researcher in epidemiology and pharmacoepidemiology. His work is instrumental in shaping how we understand the long-term management of ITP:

Registry Harmonisation: He is a founding member of the European Research Consortium for ITP (ERCI) and leads the initiative to harmonise ITP registries across Europe.

Real-World Data: He develops patient cohorts to better understand the effectiveness and safety of rare disease treatments in real-world settings.

International Expertise: With academic backgrounds in France and Denmark, he brings a vast, multi-national perspective to the study of autoimmune diseases.

Professor Moulis’s commitment to registry harmonisation and treatment safety makes his session essential for anyone interested in the future of ITP care in the UK and Europe.

🎟️ Secure your place for June 27th: https://bit.ly/49AlNZJ

Address

The Platelet Mission, Kimbolton Road
Bedford
MK442EL

Opening Hours

Monday	9am - 12am
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Telephone

+448447770559

Website

http://www.itpsupport.org.uk/, https://www.eventbrite.co.uk/e/itp-support-association-annual-patient-convention-2026-tic

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