Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners.
Why is Rare Disease Day so important?
On Rare Disease Day, events, campaigns, and initiatives are organised to raise awareness about specific rare diseases and the broader issues faced by people living with a Rare disease (PLWRD) and their families.
The day serves as a platform to advocate for research, better healthcare access, and improved social support networks for people living with rare diseases and their families. Through increased awareness and understanding, the hope is to create a more inclusive and supportive environment for the rare disease community.