Demands for answers regarding delays that put patients' lives at risk
Each year, the world commemorates World Rare Disease Day on February 29 – a symbolic date due to its rarity – and on February 28 in non-leap years, to raise awareness of the challenges, needs, talents, and life stories of those living with these pathologies.
TL;DR
- World Rare Disease Day aims to raise awareness about the challenges faced by those with rare conditions.
- An estimated 300 million people worldwide and over 116,000 in Colombia live with rare diseases.
- Colombian legislation defines rare diseases as chronically debilitating, life-threatening, and affecting 1 in 5,000 people, granting patients special state protection.
- Patients and families are experiencing high levels of stress and hopelessness due to healthcare system crises, including lack of specialist appointments and treatment interruptions.
- The Nueva EPS has been cited for numerous non-compliance issues and barriers to patient care.
- Antioquia, Valle del Cauca, Bogotá, and Cundinamarca have the highest number of registered patients in Colombia.
- 64% of diagnosed individuals in Colombia are women, and over 34,000 children have been diagnosed with rare diseases.
- A recent survey indicates that 71% of respondents believe the healthcare system has worsened since 2024, with 87% having had to resort to legal means to access services.
- Diagnoses for rare diseases can take an average of 5 years, losing valuable time for intervention.
- 72% of rare diseases are genetic, with 70% of genetic cases beginning in childhood; other causes include autoimmune conditions, rare cancers, and infections.