The European Organisation for Rare Diseases (EURORDIS – Rare Diseases Europe) is a unique, non-profit alliance of over 1,000 rare disease consumer organisations from 77 countries, including Australia that work together to improve the lives of over 30 million people living with a rare disease in Europe.
Recently, EURORDIS shared factsheets with Rare Voices Australia (RVA) as the national peak body for Australians living with a rare disease presenting Australian findings from three Rare Barometer surveys:
- The impact of living with a rare disease: barriers and enablers of independent living and social participation (78 Australian respondents)
- The diagnostic odyssey of people living with a rare disease (92 Australian respondents)
- Voices on newborn screening: the opinion of people living with a rare disease (49 Australian respondents)
This is the first time there has been a sufficient number of Australian respondents to enable EURORDIS to report Rare Barometer findings specific to Australia in this way. RVA thanks everyone who contributed their input and encourages Australians to continue participating in future Rare Barometer surveys. These surveys are a useful way to build data that reflects the Australian context and is aligned with international evidence and momentum.
Thank you to EURORDIS for generously sharing these Australian findings. These factsheets provide useful evidence to help inform rare disease advocacy in Australia.
Download the Factsheets
Screening Rare Diseases at Birth factsheet (PDF)
The Diagnostic Odyssey of People Living with a Rare Disease factsheet (PDF)
