EURO-NMD, a European Reference Network for rare neuromuscular diseases, actively supports Rare Disease Day 2025, emphasizing the importance of raising awareness and promoting inclusivity for those living with rare conditions. This annual event, held on the last day of February, highlights the need for equitable access to diagnosis, treatment, and care for rare disease patients worldwide. We collaborates with patients, caregivers, researchers, and healthcare providers to foster innovation and advocacy, aiming to improve the quality of life and outcomes for individuals with neuromuscular disorders.
What is Rare Disease Day?
Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.
Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.
Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners. Rare Disease Day provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.