The RareDiseaseDay.org community is using a rare day on the calendar — Feb. 29 — to draw attention to the many challenges facing people and families living with rare diseases.
The goal of Rare Disease Day, the organization said, is “raising awareness and generating change for the 300 million people worldwide living with a rare disease,” as well as supporting their families and caregivers.
On Feb. 29, organizers are anticipating more than 600 related events throughout 106 countries to take place.
The National Organization for Rare Disorders (NORD), based in Quincy, Mass., recognizes a number of mobility-related conditions as rare diseases, including Aicardi syndrome, alternating hemiplegia of childhood, Angelman syndrome, arthrogryposis multiplex congenita, Charcot-Marie-Tooth disease, fibrodysplasia ossificans progressive, and spastic paraplegia.
The RareDiseaseDay.org website offers a range of educational and advocacy resources, from webinars to tool kits, fact sheets, infographics, and social media assets.
There’s also an official Rare Disease Day video that can be shared.
More than 6,000 conditions worldwide have been identified as rare diseases.
