Rare Disease Day at the UNSW Health Translation Hub puts people and partnership at the centre of change
Published on the 10 April 2026
(L-R): Kris Pierce, Rachel Callander, Dalal Dawood Baumgartner, A/Prof Emma Palmer, Emma Bonser, and Jess Short at the Rare Diseases Day 2026
More than 670 people gathered at the UNSW Health Translation Hub and online for Rare Disease Day 2026, bringing together families, clinicians, researchers, advocates and policymakers to drive more connected, compassionate and collaborative rare disease care.
Held on 27 and 28 February, the event showed what is possible when lived experience is treated as essential evidence, not an afterthought. Conversations throughout the two days focused on faster diagnosis, more coordinated models of care and fairer access to emerging therapies, while building momentum towards a proposed state-based Rare Disease Strategy and Action Plan.
A defining theme of the event was that lived experience must be central to how research, policy and care are designed. For many participants, the value of this shared space was deeply personal. One participant said, “The event made it clear that lived experience is not an add-on, it is central to research and policy.” Another reflected, “For the first time, I felt heard and understood within the healthcare system.”
Rachel Callander shares her family's story during her masterclass ‘Below the Surface: Communication in Healthcare’ at Rare Disease Day 2026. Rachel’s slides featured photographs of her late daughter Evie, who was born with an extremely rare chromosomal condition.
Photo: Abbie Lygate, ASL Photography
That message was championed by keynote speaker Rachel Callander, whose sessions on the impact of language in healthcare reframed communication as a patient safety issue. By challenging deficit-based terminology, Callander provided clinicians and researchers with practical tools to support more compassionate and effective communication in clinical and community settings.
The strength of the event was not only in the range of voices in the room, but in the way those voices were brought together. NSW-based organisations including Rare Diseases NSW, an emerging centre of Sydney Children’s Hospitals Network (SCHN) and UNSW Sydney, and Belongside Families, joined national partners such as Genetic Alliance Australia and Rare Voices Australia, alongside peer support organisations, government representatives, industry and philanthropic stakeholders. This kind of collaboration is essential in healthcare, where progress depends on connecting expertise across clinical care, research, community knowledge and system design.
Attendees engaged in reflection on the question "Have you ever been told your experience matters — then not been asked for it?" during the Rare Power interactive session. Photo: Abbie Lygate, ASL Photography.
Photo: Abbie Lygate, ASL Photography.
Research was a major part of that picture. The program showcased important clinical and research infrastructure, including SCHN’s Kids Advanced Therapeutics Program, which is supporting 21 gene therapy trials and positioning NSW as a leader in advanced therapeutics. The launch of Rare Power, a consumer engagement and participation in research program, also signalled a growing commitment to embedding co-design and paid participation in future research initiatives. Together, these initiatives point to a future in which research is not only innovative, but more connected to the people it is designed to serve.
Some of the most impactful moments came from speakers whose voices are too often sidelined. Skie and Sam from the GeneEQUAL research group presented a world-first Easy Read booklet about intellectual disability, co-produced by people with intellectual disability themselves. Their work highlighted the importance of accessible communication, genuine partnership and recognising the emotional labour involved in co-design.
Rare Disease Day 2026 showed that better outcomes depend on more than scientific progress alone; they require listening well and designing systems with people rather than for them.
Rare Disease Day 2026 was delivered by Rare Diseases NSW, Genetic Alliance Australia and Belongside Families, with support from NSW Health and our partners across the sector.
The UNSW Health Translation Hub is a transformational project within the Randwick Health & Innovation Precinct, boldly reimagining the future of health.