health
Rare Diseases in Colombia: Thousands of Patients Live Without a Clear Diagnosis
In Colombia, the increase in the diagnosis of rare diseases has begun to make visible a reality that for years remained in silence.
TL;DR
- Thousands of Colombians are experiencing prolonged uncertainty due to undiagnosed rare diseases.
- While official records show around 104,000 diagnosed cases in 2023, patient organizations estimate up to 3.5 million Colombians may have rare diseases, many undiagnosed.
- Patients face recurrent symptoms, numerous medical consultations, and a lack of clear diagnoses, impacting their physical and emotional well-being.
- Barriers to accessing specialized services, medications, and diagnostic tests exacerbate the situation.
- Over 2,000 deaths associated with rare diseases were reported in 2025, highlighting the severity of the issue.
- The initiative 'Hablemos de lo raro' aims to create a safe space for individuals to share their daily experiences with rare conditions.
- Giving voice to individual experiences is crucial for understanding the real dimension of the problem and fostering connections among those affected.
- The initiative focuses on those without answers, believing that articulating their experiences is the first step to overcoming invisibility.