News & Events

Rare Diseases NSW hosts regular events for the rare disease community, health professionals and researchers.

This year Rare Diseases NSW will be hosting 2 days of special events to mark Rare Disease Day 2025 on Friday 28th February and Saturday 1st March.

Global RDD 2025_bottom crop

Clinical Day: How You Can Shape the Future of Rare Disease

Join us for a special clinical education day to celebrate International Rare Disease Day on Friday 28th February at Sydney Children’s Hospital, Randwick.

Researchers, clinicians and service providers at the cutting edge of rare disease care will share their insights. 

You will also hear from award-winning photographer Rick Guidotti, founder of Positive Exposure. This organisation celebrates the richness of human diversity, aiming to change attitudes towards individuals living with genetic, physical, behavioural or intellectual difference.

Date: Friday 28th February
Time: 12-4pm
Location: Sydney Children’s Hospital Lecture Theatre, High St, Randwick NSW 2031

Global RDD 2025_cropped

Imagine More: How You Can Shape the Future of Rare Disease

This family-friendly event on Saturday 1st March to mark International Rare Disease Day brings 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!

This event is a collaboration between Rare Diseases NSW, UNSW Sydney, the Sydney Children’s Hospital Network, and the 22q Foundation Australia & New Zealand.


Date: Saturday 1st March
Time:
 10am – 4pm
Location: Sydney Children’s Hospital Lecture Theatre, High St, Randwick NSW 2031