Rare Disease Day, observed on February 28, aims to raise awareness and advocate for equity in healthcare for individuals with rare diseases. Coordinated by EURORDIS and over 70 patient organizations, the campaign highlights the importance of community voices in driving change.
Rare Disease Day is a globally coordinated movement dedicated to rare diseases, striving for equity in social opportunities, healthcare, and access to diagnosis and therapies for people living with a rare disease. Rare Disease Day is observed every year on 28 February (or 29 February on a leap year – the rarest day of the year). It was established and is coordinated by EURORDIS in partnership with over 70 national alliance patient organisations. The day serves as a powerful focal point, driving advocacy efforts at local, national, and international levels. Since its creation in 2008, Rare Disease Day has played a crucial role in building an international rare disease community – multi-disease, global, and diverse, yet united in purpose. We’d love to include your voice in our Rare Disease Day campaign. For Rare Disease Day in 2024, we shared stories from our amazing community, along with facts and figures about leukodystrophy are rare disease.
Original title: “Rare Disease Day - Alex - The Leukodystrophy Charity”