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 at rarediseasesNSW@unsw.edu.au
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 involvement is crucial for the success of our initiatives. We work closely with many patient support organisations, particularly Rare Voices Australia, to advocate and ensure that the voices of those affected by rare diseases are heard. Our community events and workshops provide a platform for patients and families to share experiences and learn from each other.
We actively seek partnerships with educational institutions, healthcare providers, and other 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.