World Rare Disease Day: Advances and Challenges in Specialized Care in Bolívar
Since 2008, the last day of February has been celebrated as World Rare Disease Day. This date helps to raise awareness about the health situation of over 400 million people living with these conditions globally.
TL;DR
- The Caribbean Center for Orphan Diseases has been established in Bolívar to enhance recognition and support for rare disease patients.
- Cartagena ranks fifth nationally in documented rare disease cases, highlighting the need for regional specialized care.
- An alliance between Fundovida and HUC provided 763 specialized consultations and identified 35 patients with rare diseases between March 2025 and January 2026.
- Lupus (30%) and Porphyria (10%) are among the most prevalent rare diseases identified within the patient group.
- Fundovida also leads a nationally recognized program for coagulation disorders, particularly hemofilia, managing 259 patients.
- The HUC-Fundovida model focuses on high-complexity protocols and interdisciplinarity to improve patient quality of life and eliminate barriers to care.