$50
Trusted information
Helps provide trusted information and practical resources for a family navigating a rare disease diagnosis.
Support Rare Diseases NSW
Every 17 minutes, an Australian is born with a rare disease. Together, we can help ensure no family has to navigate that journey alone.
Your support helps Rare Diseases NSW bring families, clinicians and researchers together to improve diagnosis, coordinate care, connect people with research and treatments, and build a health system that works better for people living with rare and undiagnosed conditions.
Why your support matters
More than 625,000 people in New South Wales are estimated to live with a rare condition. Many families spend years searching for a diagnosis while navigating fragmented services, multiple specialists and complex systems.
Rare Diseases NSW is led by UNSW Sydney in partnership with Sydney Children's Hospitals Network. We are building a research-enabled, comprehensive model that connects people with expertise, coordinated care, research, education and opportunities for better treatment.
Philanthropic support gives us the flexibility to build the workforce, services, tools and research infrastructure needed to turn that vision into practical change.
Your impact
Gifts of every size help us build the information, navigation, workforce, research and practical tools people with rare and undiagnosed conditions need.
$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 Condition 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 navigators, genetic counsellors, fellows, lived-experience leadership and development of a statewide Rare Disease Registry.
Transformational giving
$250K
A dedicated Rare Disease Nurse Navigator can help people and families find their way through a complex health system—connecting care, supporting communication between services and helping families reach the expertise and support they need.
A transformational gift of approximately $250,000 can fund a Rare Disease Nurse Navigator position for one year , including the support required to embed the role within a coordinated rare disease service.
Building lasting change
Our goal is a sustainable system in which people with rare and undiagnosed conditions can access expertise, coordinated care, research and support without having to build the pathway themselves.