Shining a Light on Immune Thrombocytopenia (ITP)

Rare Disease Day 2026, observed on 28 February, is an opportunity to raise awareness of the millions of people worldwide living with a rare condition—and to highlight the vital role of patient organisations in providing support, information, and advocacy.

Immune thrombocytopenia (ITP) is one such rare disease. Although often invisible, its impact on daily life can be profound, affecting physical health, emotional wellbeing, education, employment, and family life. For those living with ITP, timely diagnosis, specialist care, and ongoing support are essential—but so too is access to trusted information and a supportive community.

Understanding ITP

ITP is a rare autoimmune disorder in which the immune system mistakenly attacks platelets, increasing the risk of bruising, bleeding, fatigue, and anxiety around day-to-day activities. The condition affects both adults and children and can be unpredictable, with periods of stability interrupted by sudden relapses.

Living with ITP is not only about managing platelet counts. Many people describe the emotional and psychological burden of uncertainty, treatment side effects, and feeling misunderstood—particularly because outward signs of the condition are not always visible.

The Role of the ITP Support Association

For over three decades, the ITP Support Association has been at the heart of the ITP community, working to ensure that no one faces the condition alone. As the UK’s leading charity dedicated to ITP, the Association provides a trusted voice for patients, families, and carers.

Its work includes:
• Providing accurate, evidence-based information for people affected by ITP 
• Offering emotional support and reassurance through patient resources and peer connection 
• Raising awareness of ITP among healthcare professionals and the wider public 
• Advocating for patient-centred care, research, and improved services 
• Bringing patients and specialists together through meetings, events, and educational initiatives 

Why Rare Disease Day Matters for the ITP Community

Rare Disease Day plays a crucial role in reminding decision-makers, healthcare professionals, and the public that rare diseases are a shared challenge. Although each condition may affect relatively few people, collectively rare diseases impact millions—and require coordinated, compassionate care.

For the ITP community, Rare Disease Day is an opportunity to:
• Highlight the real-world impact of living with a fluctuating and often misunderstood condition 
• Emphasise the importance of listening to patient experiences 
• Call for continued investment in research, education, and support services 
• Celebrate the strength and resilience of people living with ITP and their families 

Putting Patients at the Centre

A consistent message from people affected by ITP is the importance of being heard, believed, and involved in decisions about their care. Patient organisations play a vital role in amplifying these voices—ensuring that lived experience informs clinical practice, research priorities, and health policy.

Rare Disease Day 2026: Looking Ahead

On Rare Disease Day 2026, we recognise everyone affected by ITP and reaffirm our commitment to improving understanding, support, and outcomes for all. Through continued advocacy, education, and collaboration, the ITP Support Association will remain a strong and trusted voice for the ITP community—today and into the future.

Mervyn Morgan

February 2026