Beyond the Count

A global overview of new treatments, real-world data and patient-centred research.  

ASH 2025 delivered some of the most exciting developments the ITP community has seen in years. In this special highlights episode of Beyond the Count, Danielle takes you inside the world’s largest haematology conference to explore the research, conversations and global collaboration shaping the future of ITP care.

Across four days in Orlando, more than 30,000 experts gathered to share new discoveries. Danielle breaks down the key updates, including early CAR T‑cell therapy results, new insights into BTK inhibitors like Rilzabrutinib, important data on women’s health and fatigue, and the late‑breaking VAYHIT2 trial investigating ianalumab with eltrombopag.

You’ll also hear short audio insights from global ITP leaders — Associate Professor Phil Choi, Professor Dr Nichola Cooper, Dr Michele Lambert and Taylor Bowles from the PDSA — offering their perspectives on the most meaningful research and posters presented this year.

This episode also highlights why patient organisations like ITPANZ attend international conferences: to advocate for the patient voice, build global partnerships and bring the latest knowledge home to Australia and New Zealand.

Whether you are newly diagnosed or simply curious about what is coming next, this episode offers a clear and hopeful look at the breakthroughs emerging in ITP research.

Clear answers on diagnosis, symptoms, and living with Immune Thrombocytopenia (ITP)

Understanding Immune Thrombocytopenia (ITP) can feel overwhelming, especially in the early days after diagnosis. In this episode of Beyond the Count, Consultant Haematologist Dr Sara Ng joins Danielle to break down the essentials of ITP in simple, reassuring language.

Together, they explore what platelets do, why the immune system sometimes targets them, and how doctors diagnose ITP through a process of exclusion. Sara explains the differences between acute, persistent, and chronic ITP, the symptoms patients may notice, and how fatigue and brain fog fit into the picture.

They also discuss the wide range of experiences people have with ITP, why platelet counts alone never tell the full story, and how to understand the difference between symptoms of the condition and side effects of treatment.

Whether you are newly diagnosed, supporting a loved one, or simply looking to better understand ITP, this episode offers practical insights, compassionate guidance, and the foundational knowledge every patient should have.

In this episode of Beyond the Count, we break down what ITP is, how it’s diagnosed, and what it means for everyday life.

Read more about the I-WISh Results

Review the ITP Treatment Information Sheets

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Deciding when — or whether — to treat a child with ITP can feel overwhelming for families.

In this episode of Beyond the Count, Associate Professor Dr Tina Carter, Paediatric Haematologist at Perth Children’s Hospital, brings more than 30 years of experience to help parents understand how clinicians make these decisions.

Tina explains why ITP is always a diagnosis of exclusion, what doctors look for during assessment, and how factors like bleeding, age, symptoms, and family anxiety influence treatment choices. She walks us through first‑line options such as steroids and IVIG, the realities of side effects, and when second‑line therapies may be considered for children with persistent or chronic ITP.

This episode offers clear, compassionate guidance for parents navigating a new diagnosis — with practical insights, reassurance, and a reminder that most children recover well, often without treatment.

Medical advisors play a crucial role in rare disease care, ensuring patients are not only treated but truly understood.

In this episode of Beyond the Count, host Danielle Boyle speaks with Dr Danny Hsu, Consultant Haematologist at Liverpool Hospital and Medical Advisor to ITP Australia and New Zealand. Danny explains how medical advisors help shape treatment guidelines, support patient organisations, and translate complex medical information into clear, practical language for families.

The conversation highlights how advisors strengthen trust between patients and clinicians, contribute to advocacy and education, and provide reassurance that care is guided by experts. This episode offers insight into the human side of expertise and why medical advisors are such an important part of the ITP community.

When a toddler is diagnosed with Immune Thrombocytopenia (ITP), everyday bumps and bruises can feel overwhelming. 

In this episode of Beyond the Count, host Danielle Boyle speaks with Associate Professor Dr Chris Barnes, Paediatric Haematologist at the Royal Children’s Hospital in Melbourne and Medical Advisor to ITP Australia and New Zealand.

Together, they explore how ITP presents in children under five, why spontaneous remission is common, and what parents should watch for when it comes to bleeding and head knocks.

The conversation also covers practical tips for balancing safety with letting kids be kids, preparing daycare and playgroup staff with the correct information, and knowing when to worry versus when to relax. This episode offers clarity, reassurance, and expert guidance to help families navigate the early months of ITP with confidence.

Hearing the words “your child has ITP” can be overwhelming for any parent.

In this episode of Beyond the Count, host Danielle Boyle is joined by Dr Melanie Jackson, Paediatric Haematologist at Queensland Children’s Hospital and Medical Advisor to ITP Australia and New Zealand. Together, they break down what Immune Thrombocytopenia (ITP) means for kids, what parents can expect in the first few weeks after diagnosis, and how to talk to children about their condition in age‑appropriate, reassuring ways.

Dr Jackson explains why ITP happens in kids, what symptoms to watch for, and why treatment isn’t always needed right away. Parents will hear clear guidance on monitoring, managing emotions, and building trust with their child during this uncertain time. Most importantly, families will be reassured that ITP is not their fault and that many children recover well.

This episode is designed to give parents the confidence, compassion, and practical tools they need to support their children living with ITP.

In this episode of Beyond the Count, we’re joined by Caroline Kruse, President and CEO of PDSA and Co-founder and Chair of the International ITP Alliance. 

Caroline shares how the Alliance began, why global collaboration matters in rare diseases, and how bringing together patient organisations from around the world is helping to raise awareness, share resources and strengthen support for people with ITP everywhere.

We also examine some of the Alliance’s major milestones to date, including ITP Awareness Week, and how resource sharing and collaboration have helped drive change in over 30 countries worldwide.

When treatments stopped working, Danielle sought a second opinion. It gave her clarity, confidence, and a new way forward.

Getting diagnosed during a pandemic wasn’t easy, but ITP Warrior @The.No.Spleen.Queen, Danielle Hodges, knew something didn’t feel right.

In this episode, she walks us through why she decided to get a second opinion on her ITP diagnosis, what changed as a result, and why trusting your instincts as a patient matters.

If you’ve ever felt unsure about your diagnosis or treatment plan, this one’s for you.

This is the fourth and final part of the Fuelling Your Health Series with Associate Professor, Dr Phil Choi.

In this episode, Dr Phil Choi explores how food and supplements may help manage some of the more common side effects linked to ITP and its treatments.

From fatigue and iron deficiency to digestive issues and steroid-related symptoms, many people experience side effects that impact daily life. This episode looks at how nutrition can support recovery, ease discomfort and improve overall well-being during treatment.

Dr Choi shares evidence-based strategies and simple tips drawn from both clinical research and real-world experience.

Behind the scenes of a project giving teenagers a voice in their ITP journey.

In Part 3 of our four-part Fuelling Your Health series, Dr Phil Choi helps unpack how the immune system, gut health and inflammation are all connected in the context of ITP.

In this episode of Beyond the Count, host Danielle Boyle is joined by Barbara Lovrencic, ITP patient advocate, President of AIPIT (Italy’s ITP patient organisation), and Vice Chair of the International ITP Alliance.