On 11 February 2025, I had the privilege of attending the Rare Disease Day Parliamentary Event at Parliament House, hosted by Rare Voices Australia (RVA) and the Parliamentary Friends of Rare Diseases. As the CEO of ITP Australia New Zealand (ITPANZ) and an Immune Thrombocytopenia (ITP) patient, this event held special significance for me – both professionally and personally.

This year’s event took place during the last sitting fortnight of Parliament before the upcoming election, making it a key moment to reflect on the progress made over the last four years and to discuss the future of rare disease advocacy in Australia. The event featured speeches from key figures, including the Hon Mark Butler MP, Minister for Health and Aged Care, and representatives from RVA and the Parliamentary Friends of Rare Diseases.

Rare Disease Day is a globally recognised movement that amplifies the voices of those living with rare diseases, striving for equity in healthcare, diagnosis, and social support. With an estimated two million Australians affected by a rare disease, the event was a crucial platform to highlight the ongoing challenges and unmet needs of our community.

Walking into Parliament House, the atmosphere was one of collaboration and advocacy. The room was filled with passionate individuals—patients, clinicians, researchers, and policymakers—all committed to improving the lives of those with rare conditions. It was inspiring to witness Members of Parliament engaging directly with patient organisations, listening to real experiences, and discussing policy solutions that could lead to tangible change.

Throughout the event, there was a strong emphasis on the importance of timely and accurate diagnosis, access to appropriate treatments, and ongoing support for individuals and families navigating life with a rare disease. These are challenges that resonate deeply within the ITP community. As a rare autoimmune blood disorder, ITP can have significant impacts on quality of life, yet awareness remains limited, and treatment pathways are often complex.

A key focus of the discussions was celebrating the achievements of the past four years, including advancements in Blood Spot testing and the recent establishment of Genomics Australia. These developments mark significant progress in early diagnosis and precision medicine, providing hope for improved outcomes for people living with rare diseases.

I was honoured to share insights on the experiences of ITP patients – many of whom face prolonged diagnostic journeys, uncertainty in treatment options, and difficulties accessing appropriate care. Engaging with policymakers and healthcare leaders provided an invaluable opportunity to advocate for more research, better funding, and a healthcare system that truly accommodates the needs of rare disease patients.

One of the most moving moments of the event was hearing personal stories from fellow rare disease advocates. These narratives reinforced the urgent need for systemic change and stronger government support. It was a reminder that while each rare disease is unique, our collective challenges unite us in this advocacy.

While the future of the Parliamentary Friends of Rare Diseases remains uncertain in the next term of government, we remain hopeful that their advocacy will continue. The direction and peak body leadership of RVA will undoubtedly help drive further progress, ensuring that the voices of rare disease patients remain heard in the years ahead.

As we move forward in 2025, ITPANZ remains dedicated to ensuring that people with ITP are seen, heard, and supported. This event was a step towards stronger collaborations and policy advancements that can make a real difference.

I extend my gratitude to RVA for organising such a meaningful event and to all those who attended and contributed.

Together, we can continue to drive progress and ensure that no one living with a rare disease is left behind.

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Image Sources: Rare Voices Australia and ITPANZ