I just found out that February 28th is World Rare Disease Day, and honestly, the numbers I came across are quite concerning, especially for Mexico.

Here's the situation: between 300 and 350 million people worldwide live with some form of rare disease. In Mexico, we're talking about approximately 10 million people, although there are no precise official figures. What caught my attention most is that the WHO recognizes over 7,000 conditions of this kind, and most are chronic, degenerative, and disabling.

But here’s the critical part. The average time to get a clinical diagnosis in Mexico is 8 years. Eight years. Some patients wait up to 34 years. During that process, they consult an average of 6 specialists, and many end up seeing 10 or more doctors before knowing what they have. It’s an exhausting journey.

What’s interesting is that although more than 80% of these diseases have a genetic cause, only 27.7% of patients have undergone molecular testing, and just 17% have a definitive genetic diagnosis. The problem: these tests are expensive, and families pay out of pocket.

Until 2023, Mexico officially recognized only 20 rare diseases. Then it adopted the (ICD-11) International Classification of Diseases, expanding recognition to over 5,500. An advance, but clearly insufficient.

And then there’s the issue of treatments. So-called orphan drugs are not covered by public health programs, forcing many families to bear huge expenses. More than half of the patients receiving care say the costs are high or very high.

It’s not just a medical problem. These people face barriers in education, employment, and social life. Lack of financial support and limited access to healthcare services are the main issues reported.

The 2026 campaign, under the slogan 'More Than You Can Imagine,' aims to amplify the voices of young people living with these conditions and demand more sensitive healthcare systems. The movement has been commemorated in over 100 countries since its inception in 2008.

In Mexico, this is an urgent call to strengthen the national registry, expand neonatal screening, promote genetic research, and ensure that no one is left out of the healthcare system due to the low prevalence of their condition. Because although they are rare, millions of people in the country live with them and continue waiting for timely diagnoses, accessible treatments, and truly comprehensive care.