Rare Diseases NSW will be Australia's first research-enabled Comprehensive Centre of Expertise for Rare and Undiagnosed Diseases, based at Sydney Children's Hospital, Randwick. We're revolutionising healthcare delivery for the 1 in 12 Australians living with rare conditions through an innovative, patient-centred approach that integrates research, clinical care, education, and advocacy.

Our Mission: To support the holistic health needs of children and adults, and their families living with a rare disease, enabling them to achieve their best possible health and wellbeing outcomes.

Our Vision: To be internationally recognised as a leading centre of expertise that provides comprehensive, integrated rare disease healthcare, underpinned by innovative research, education, training, and advocacy. We accelerate the discovery of underlying causes and effective therapies, rapidly translating them into healthcare to improve outcomes for all individuals living with rare diseases in an equitable, culturally appropriate, and person-centred way.

Get Involved: Whether you're a healthcare professional, researcher, patient advocate, policymaker, or community member, there are many ways to connect with our mission:
- Join our Community of Practice
- Attend our educational webinars and events
- Participate in our research initiatives
- Support our advocacy efforts
- Share your story to drive change

Because it's not rare when it's your child or family.

Rare Diseases NSW

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Rare Diseases NSW

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Teams

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