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.
Rachael Callander will deliver a powerful keynote, followed by a practical and reflective masterclass for healthcare professionals and families. Through storytelling, evidence-informed frameworks, and lived experience, she challenges deficit-based narratives in healthcare and teaches compassionate, empowering communication that reduces trauma and builds connection.
Across the program, you’ll hear from people with lived experience, clinical and research leaders, and advocates working to improve diagnosis, care and innovation in rare disease. The event will include keynote talks, panel discussions, interactive sessions, and family-inclusive programming — with different sessions designed to appeal to different audiences.
To help reduce barriers to attending in person, travel bursaries are available for people living in rural and regional NSW, including people living with a rare disease, parents, carers and family members, and healthcare professionals. These bursaries can help cover travel-related costs such as transport and accommodation.
If distance has previously made it difficult for you to attend events like this, we strongly encourage you 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.
Whether you attend for a single session or across multiple days, in person or online, we would love to have you join us as we work together towards better care, stronger connections and future cures.
