More than 300 million people worldwide and two million Australians live with rare disease, and 72% of rare diseases are genetic. This internationally recognised day of awareness has been building support for the rare disease community since 2008 and calls for recognition that not all Australians can live their best lives, there is not equitable access to testing and the solution requires a collaborative approach from everyone.
GSNV events for Rare Disease Day this year follow the theme “Nothing about us without us” and feature keynote speaker Richard Vines, Co-Founder and Chief Executive of Rare Cancers Australia.