Andalucía expands specialized medical units for rare diseases

At the XI International Congress of Orphan Drugs and Rare Diseases held in Seville, officials and patient advocates discussed the advancement of care for rare diseases. The Spanish Federation of Rare Diseases (FEDER) called for scientific breakthroughs in genetics, genomics, and new therapies to be translated into equitable, concrete results for patients across all territories.

In Andalucía, the regional government reported that the area has added four new Centers, Services, and Reference Units (CSUR) recognized by the Ministry of Health. The region now holds 29 specific CSURs and is included in 10 European Reference Networks (RER). To support these efforts, the government has approved the Rare Disease Care Plan (PAPER) 2025-2029, a program backed by 8.7 million euros aimed at improving primary and hospital care and accelerating diagnostic processes.

Experts at the congress highlighted the importance of early diagnosis, noting that while technological advances offer new opportunities, they must be supported by multidisciplinary teams and specialized training for healthcare professionals. Currently, in Spain, more than 3.4 million people live with a rare disease, with an average diagnostic time of six years, and only approximately 6 percent of these conditions have a specific treatment.