Support Rare Diseases NSW – Care. Connect. Cure.
Every 17 minutes, an Australian is born with a rare disease. In New South Wales, more than 625,000 people are living with a rare condition, yet many families spend years searching for a diagnosis while navigating a fragmented health system alone. Rare Diseases NSW is changing that. Led by UNSW in partnership with Sydney Children's Hospitals Network, we're bringing families, clinicians and researchers together to improve diagnosis, connect people to life-changing research and treatments, and provide the coordinated care every family deserves. Your donation helps fund care navigators, genetic counsellors, research, education and family-led innovation, so people living with rare diseases can access expert care, closer to home, and with greater hope for the future. Together, we can ensure no family faces a rare disease journey alone.
Donation Impact:
- $50: Helps provide trusted information and practical resources for a family navigating a rare disease diagnosis.
- $150: Helps connect families with care navigation, peer support and community resources, so they don't have to navigate their journey alone.
- $500: Helps develop tools such as Rare Disease Passports, family guidebooks and digital resources that improve communication and coordinated care.
- $1,000: Helps support the next generation of rare disease experts through training for nurse navigators, genetic counsellors, clinicians and researchers.
- $5,000: Helps build the specialised workforce and infrastructure that transforms rare disease care, including Rare Disease Nurse Navigators, Peer Support Navigators, Genetic Counsellors, Rare Disease Fellows, lived-experience leaders who co-design research and care, and the development of a statewide Rare Disease Registry.
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