Celebrating Rare Disease Day on February 29!


Celebrating Rare Disease Day on February 29!

February 29 marks Rare Disease Day (RDD), an annual observance occurring on February 29, the “rarest” day of the year! Rare Disease Day, established in 2008, is a global movement advocating for social equity, healthcare access, and diagnosis and therapies for those with rare diseases. Observed annually on February 28 (or 29 in leap years), it unites a diverse international rare disease community under the coordination of EURORDIS and 65+ national alliance patient organisations.

RDD aims to enhance awareness of rare diseases, which can impact 1 in 20 individuals at some point in their lives. Unfortunately, the majority of these conditions lack a cure, and numerous cases go undiagnosed. Consequently, on this day, IF collaborates with numerous global organisations dedicated to rare diseases and disabilities. IF is particularly passionate about advocating for multidisciplinary care for those living with SBH and urging improved collaboration among medical, social, and support services.

There are currently over 6000 rare diseases and conditions, including Spina Bifida and Hydrocephalus (SBH). Advocating on behalf of the SBH community, IF urges researchers and decision-makers to intensify their efforts in addressing rare diseases, emphasising the need for increased research and attention.

Join us in raising awareness by sharing colours on social media, illuminating buildings, and engaging in advocacy to collectively strive to improve the lives of the millions of people worldwide affected by rare diseases! 

Download the toolkit and spread it among your community here https://www.rarediseaseday.org/downloads/ 

For more information about Rare Disease Day, visit https://www.rarediseaseday.org/