Rare Disease Day is celebrated on February 29th. A “rare” date that only occurs once every four years. The main objective of this day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Due to rare disease, patients and families share a common struggle; difficulty in finding specialists and treatment options, and a lack of funding for research due to the lack of a financial incentive to create treatments for only a handful of patients.
Building awareness of rare diseases is important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
It is important to raise awareness for rare diseases so that people living with them know they are not alone, and to help bring attention to the need for resources and new treatments
You can find more information, resources and how to share your support at Rare Disease Day