About Rare Diseases NSW
Our mission is to support the holistic health needs of children and adults living with a rare disease, and their families. To enable them to achieve their best possible health and wellbeing outcomes.
Our vision is Rare Diseases NSW will be internationally recognised as a leading centre of expertise that provides comprehensive, integrated rare disease health care, underpinned by world leading research, education, training, and advocacy. It will accelerate the discovery of underlying causes and novel therapies which will be rapidly translated into healthcare to improve the health outcomes of all individuals living with a rare disease in an equitable, culturally appropriate, and person-centred way.
Read more: https://rarediseasesnsw.org.au/home/about/
Join us for two events, celebrating International Rare Disease Day in Sydney, Australia.
– Friday 28th February 2025: Hear from leading researchers, clinicians, those with lived experience, and service providers at the forefront of rare disease care.
– Saturday 1st March 2025: Family-friendly event bringing together people living with a rare disease, health professionals, and the wider community to connect, share, and inspire. There will be fun activities for kids, plus it is FREE OF CHARGE!
Special Guest: Award-winning photographer Rick Guidotti, founder of Positive Exposure, will share his inspiring work celebrating human diversity and changing attitudes towards individuals with genetic, physical, behavioural, or intellectual differences
This event is a collaboration between Rare Diseases NSW, UNSW Sydney, the Sydney Children’s Hospital Network, and the 22q Foundation Australia & New Zealand.
For more information, contact [email protected]
Don’t miss this opportunity to learn, connect, and celebrate the richness of human diversity. Let’s come together to support the rare disease community and promote positive change.