Recently, I learned about something that probably many people are unaware of: International Rare Disease Day is observed every February 28th, and the reason behind this date is quite interesting.

It all started in 1997 when Eurodis was founded, an organization dedicated to supporting people living with these atypical conditions. Years later, in 2008, they decided to create a special day to raise awareness of this reality. The choice of the last day of February was no coincidence: they selected this date precisely because of the rarity of the month itself, with its variations in leap years. It’s a clever way to remind us that these diseases are also rare, atypical, and infrequent.

What’s interesting is understanding what it really means to live with a rare disease. We’re talking about conditions that present very diverse symptoms from one patient to another, making diagnosis difficult even for doctors. With low prevalence in the population and limited scientific research, many people spend years searching for answers before receiving an accurate diagnosis.

Eurodis data paint a quite challenging picture: approximately 30 million people in Europe live with these conditions, nearly 4% of the population. There are over 6,000 rare diseases cataloged, although only 1,200 have documented cases or scientific publications. Worldwide, they affect one in every 2,000 people. The most concerning part is that patients take an average of five years to receive an accurate diagnosis.

Other relevant data: 85% of these conditions affect fewer than one person per million, 75% are detected in children, and 72% have a genetic origin. Additionally, seven out of ten diagnosed individuals must leave their professional activities, and they are three times more likely to face depression.

This commemoration reminds us of the importance of family support, scientific research, and the need to improve healthcare systems for these populations. It’s a day to reflect on the difficulties faced silently by millions of people.