International congress on rare diseases in Spain

The XI International Congress of Orphan Drugs and Rare Diseases opened in Sevilla, organized by the Spanish Federation of Rare Diseases (Feder). The event brought together over 250 participants, including researchers and patients, to discuss diagnosis, treatment, and research. Feder President Juan Carrión emphasized the importance of patients becoming “active participants in the decision-making process,” focusing on the pillars of access, equity, and information.

Following the congress discussions, updates regarding regional care in Andalucía were highlighted. The regional government reported the addition of four new Centers, Services, and Reference Units (CSUR) recognized by the Ministry of Health, bringing the regional total to 29 CSURs. To support these advancements, the government approved the Rare Disease Care Plan (PAPER) 2025-2029, an 8.7 million euro program designed to improve primary and hospital care and accelerate diagnostic processes. Experts noted that while technological advances are increasing, Spain still faces challenges such as an average diagnostic time of six years for the more than 3.4 million people living with rare diseases.