Care, Connect, Cure is a free, inaugural hybrid summit hosted by Rare Diseases NSW, Genetic Alliance Australia, and Belongside Families, bringing together researchers, clinicians, policymakers, industry, patient advocates, and families to advance rare disease care and research in NSW and beyond.

Held over two days in Sydney with online participation available, the event will explore innovation across genomics, AI and digital health, advanced therapeutics, workforce capability, mental health, and culturally safe models of care. Grounded in lived experience and cutting-edge research, the program features keynote speakers, panels, interactive sessions, showcases, and a dedicated children and young people’s program.

What makes this event special is its focus on connection and equity—breaking down silos between research, care, and community. With free registration, travel bursaries for regional and remote participants, hybrid access, and strong accessibility supports, the event is designed to be inclusive, practical, and action-oriented.

Whether you’re working in health or research, shaping policy, developing innovation, or navigating rare disease as a patient, parent, or carer, this Summit offers a rare opportunity to learn, collaborate, and help shape the future of rare disease care in NSW.

Travel bursaries are available for people living in rural and regional NSW to help reduce the cost of attending the event in person. Visit our website for more information and to apply.

Rare Disease Day 2026 is hosted by Rare Diseases NSW and Genetic Alliance Australia, in partnership with UNSW and Sydney Children's Hospitals Network, with support from NSW Health, Belongside Families, SATB2 Connect, & SCN2A Australia.

Contact the host of Rare Disease Day 2026: Care, Connect, Cure