100 Days to Rare Disease Day 2026

Today marks 100 days until Rare Disease Day 2026, the global day of awareness dedicated to the 300 million people living with a rare disease. Each year, on 28 February (or 29 February in leap years), communities around the world come together to raise awareness, share stories, and call for better access to diagnosis, care, and treatment.

Rare Disease Day was created in 2008 and is coordinated by EURORDIS–Rare Diseases Europe, working with over 70 national alliances. It has grown into a worldwide movement, bringing visibility to people who often face delays in diagnosis, limited treatment options, and barriers in daily life. The day is patient-led, but everyone is invited to take part.

A new campaign for 2026

The campaign for Rare Disease Day 2026 has now launched. This year’s message places equity and representation at the centre. The focus is on ensuring that people living with a rare disease, and those who support them, have a meaningful voice in the decisions that shape their lives.

To mark the start of the countdown, EURORDIS released the official 2026 campaign video, featuring five individuals from different countries: Mak, Linges, Micah, Ayça, and Burak. Their stories offer a glimpse into the daily realities of rare diseases, and a reminder of the courage, strength, and resilience found across the community.

National alliances are sharing the video in their own languages, helping it reach families, clinicians, researchers, and local communities worldwide.

You can watch the official video below.

Building momentum together

Rare Disease Day brings people and organisations together each year through local events, illuminated landmarks, social media activities, and conversations led by patients and their families. These collective efforts raise awareness and help keep rare diseases on the public and political agenda.

With 100 days to go, preparations are beginning across Europe and beyond. Patient organisations, healthcare professionals, researchers, and advocates are getting ready to share stories, host events, and continue pushing for equity in care and access.

Resources, campaign materials, and event information are available on the Rare Disease Day website.