Today marks Rare Disease Day, which aims to raise awareness for the 300 million people around the world who live with rare diseases. Spinocerebellar ataxia, Friedreich’s Ataxia, and ARSACS are just a few of the of over 6000 rare diseases that have been identified.
The main goal of raising awareness of Rare Disease Day is to achieve equity for people living with rare diseases. By their nature, people living with rare diseases can run into a number of barriers in health care systems designed for common diseases. This includes access to diagnosis, ongoing care, and treatment. Folks can also face discrimination when attending school or at work.
Today is a call to action for people with rare diseases to have equal opportunities in work and social life, as well as access to health care and treatment.
For more information, including milestones in achieving equity, actions you can take to advocate for equity, and a list of events occurring worldwide, visit RareDiseaseDay.org.