Community and Partnerships

Community involvement is crucial for the success of our initiatives. We work closely with many patient organisations including Genetic Alliance Australia, Belongside Families and Rare Voices Australia, as well as a growing number of individual advocacy groups such as 22q Foundation Australia and New Zealand, SATB2 Connect, and SCN2A Australia.

We describe these groups as our friends and encourage you to visit Our Friends page to learn more about their incredible work and how they could support you and your family, or your patients. 

We held successful rare disease community events in 2025 and look forward to more opportunities to share experiences and learn from each other.

If you are interested in partnering with Rare Diseases NSW, whether you are an individual, an organisation, or a health professional, we’d love to hear from you

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Patients as partners

When it comes to individual care, all of the services that make up Rare Diseases NSW take a family-centred approach. We believe in listening to, and working alongside patients. We recognise that people living with rare disease are experts in their own experiences, and often develop considerable expertise relating to their condition. Read on to see how this extends to other areas of the network.

Community Engagement

Community involvement is crucial for the success of our initiatives. We work closely with many patient organisations including Genetic Alliance Australia, Belongside Families and Rare Voices Australia, as well as a growing number of individual advocacy groups such as 22q Foundation Australia and New Zealand, SATB2 Connect, and SCN2A Australia.

We describe these groups as our friends and encourage you to visit our Friends page to learn more about their incredible work and how they could support you and your family, or your patients. 

We held successful rare disease community events in 2025 and look forward to more opportunities to share experiences and learn from each other.

Partnerships and Collaboration

We actively seek partnerships with educational institutions, healthcare providers, research foundations and other not-for-profit organisations to broaden our reach and impact. Through these collaborations, we aim to create a more inclusive and informed community that can better support those living with rare diseases.