Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Thousands of rare and ultra-rare disorders exist. Some are so rare that they don’t even have a syndromic name attached to them. While individually uncommon, these rare diseases, including cancers, affect around 400,000 Australian children, with many requiring lifetime care.
The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families. The impacts on the health and quality of life for these children, as well for their families and the health system as a whole are significant.
Find out more about Rare Disease Day 2021 and the official video here.
Rare Disease Day in Australia events can be found here.
Find out more about how Luminesce Alliance is contributing to rare diseases research, development, trialing and implementation of new novel therapies and medical technologies in the paediatric setting by reading patient case studies in our recent Parliamentary Inquiry Submission here.