On 28 February we celebrate Rare Disease Day, established in 2008 with the aim of advocating for people worldwide living with a rare disease, their families and carers.
Coordinated by EURORDIS and supported by over 65 national patient organizations, Rare Disease Day serves as a powerful platform for raising awareness. It is an opportunity to shine a light on the struggles faced by those with rare disorders and to advocate for equity in healthcare, diagnosis, and access to treatment. Rare diseases, defined as conditions that affect fewer than 1 in 2,000 people, often remain in the shadows, overlooked by the broader healthcare system.
Rare Disease Day is a great opportunity to raise awareness and improve knowledge on rare diseases among the general public while encouraging policymakers, public authorities, industries and researchers to address the unmet needs of people who live with a rare disorder.
How can you get involved?
- Join the Global Chain of Lights campaign: light up or decorate your home with the Rare Disease Day colours at 7PM local time on 28th February 2025
- Share your colours: spread the message on social media by sharing photos, videos and experiences. Use the hashtags #RareDiseaseDay and #LightUpForRare
- Organise or attend local events: find registered Rare Disease Day events in your area or host one to raise awareness https://www.rarediseaseday.org/category/events/
- Find and share awareness material: https://www.rarediseaseday.org/downloads/
the European Commission for Rare Disease Day 2025
This year, the European Commission published a booklet celebrating the dedication and expertise of the European Reference Networks, which play a crucial role in improving the lives of patients with rare diseases and their families. Alongside this, two informative factsheets were released, detailing the Commission’s efforts in addressing the challenges posed by rare diseases.
Find these documents in our informative materials section.
