I. Overview
Rare Disease Day is observed each year on 28 February (or 29 February in leap years) to raise awareness of rare diseases, the large number of people living with them, and the need for equitable access to diagnosis, care and support. The day unites patients, families, healthcare professionals and researchers to advocate for better services and to reduce the isolation often experienced by individuals with rare conditions.
II. Significance of the Theme
The 2025 theme is “More than you can imagine; an anthology of rare experiences.” Pace Hospital+1 This theme emphasises the diversity and uniqueness of rare disease journeys, encourages sharing of personal stories, and pushes for a healthcare system that sees the individual behind the diagnosis. It advocates that awareness, research and technology must respond to experiences that are often invisible and overlooked.
III. What Is a Rare Disease?
A rare disease is typically defined as a condition affecting a small percentage of the population—often fewer than 1 in 2,000 people in Europe, or tailored definitions in other regions. Many rare diseases are chronic, progressive, genetic, and may affect multiple organ systems. Delayed diagnosis, limited treatments and lack of awareness are significant challenges.
IV. Quick Facts about Rare Diseases
There are over 300 million people worldwide living with one or more rare diseases. VASCERN+1
More than 7,000 distinct rare diseases have been identified.
Up to 95 % of rare diseases have no approved treatment.
Many rare diseases appear in infancy or childhood, and around 30 % of children with rare diseases will not reach their fifth birthday.
A rare disease may affect just 1 or 2 people in some populations, making recognition and research difficult. itpsupport.org.uk+1
Early diagnosis and coordinated care significantly improve quality of life and outcomes.
This year’s campaign encourages the #LightUpForRare initiative in over 100 countries. VASCERN
V. A Brief History of the Day
2008: The first Rare Disease Day was held on 29 February in Europe, organised by EURORDIS. Wikipedia
2010s: The observance expanded globally, with hundreds of patient organisations and countries joining efforts.
2024: The theme “Share Your Colours!” invited global participation.
2025: Marked the 18th edition with the theme “More than you can imagine; an anthology of rare experiences.” eurordis.org+1
VI. How to Observe Rare Disease Day
Organise or join events such as webinars, panel discussions or art exhibitions that highlight rare disease stories and challenges.
Share personal narratives, photos or videos of individuals living with rare conditions using #RareDiseaseDay and #LightUpForRare.
Light up local landmarks or buildings in purple, green, pink and blue to show solidarity.
Encourage healthcare systems to improve diagnosis, access and research for rare diseases.
Support patient-led organisations advocating for policy change, funding and treatment pathways.
Incorporate educational activities in schools and communities to reduce stigma and isolation for those affected.
