1. It is celebrated on the last day of February... by the way.
Rare Disease Day is celebrated on the last day of February. The first edition took place on February 29, in a leap year, the "strangest" day on the calendar. In non-leap years, the day is moved to February 28, maintaining the symbolism.
2. It was born in 2008, and from the beginning it was a campaign with global ambition.
The day was created in 2008 by EURORDIS (Rare Diseases Europe) and since then it has been conceived as an internationally coordinated movement.
3. It's a patient-driven campaign... but it is open to everyone.
One of its keys is that it is patient-led, but invites anyone to participate: affected people, families, caregivers, health professionals, researchers, policymakers, industry and citizens.
4. It's not just "awareness": his favorite word is "equity."
The campaign itself defines itself as a movement for equity: in social opportunities, health care and access to diagnosis and therapies. In other words, it seeks real changes, not just visibility.
5. For Ferrer, it is not just a date: it is a strategic decision.
At Ferrer, Rare Disease Day goes beyond being an annual milestone. It reflects a deliberate decision to focus on rare diseases as a way to put our purpose into practice. Each year, the day becomes a moment to stop and reaffirm what this means in real terms: listening to patients, working together with their communities and acting where there is an unmet need.
6. The figure that puts it all into perspective: 300 million.
Rare Disease Day puts the spotlight on a huge group: 300 million people around the world live with a rare disease.
7. And even so, we talk about "rare" because there are thousands of different conditions.
The campaign highlights that there are more than 6,000 rare diseases, which explains why the challenge of diagnosis, access and research is so complex.
8. One day, thousands of actions: from lighting up buildings to pressuring policymakers.
There is no single "right" way to participate. The campaign site itself mentions typical actions such as organizing events, lighting buildings, sharing stories or pushing for change.
9. The campaign relies on a huge network of national allies.
EURORDIS coordinates Rare Disease Day together with a network of national patient alliances (the site talks about national alliances and multiple official partners), which allows it to be both a local and a global mobilisation.
10. What rarely makes headlines: Living with a rare disease often involves disability.
Here comes the social data you mentioned, supported by the EURORDIS Rare Barometer survey: 8 out of 10 people with rare diseases live with disabilities, often complex and diverse.
11. The "invisible problem": accessing public support is difficult for more than half.
The same survey indicates that 53% of the people surveyed find it difficult or very difficult to access publicly funded support (care, home support, financial aid, assistive technology, mobility aids, etc.).
12. The fact that explains why this day is also about education and employment
Rare Barometer also puts figures on the social gap: 23% of people with rare diseases are unemployed, compared to a rate of 6.1% in the general EU population in 2023. It is one of those data that turns "awareness" into political urgency.
13. It's also a reminder that real work happens year-round.
At Ferrer, this translates into a broader commitment that goes beyond traditional pharmaceutical activity. The focus is on improving the patient experience through a holistic approach, recognizing the complex interplay of medical, social, and emotional factors that influence health. Not just one day a year, but every day.
