The Spanish Association for Orphan and Ultra-Orphan Drugs (AELMHU) participated on Monday in the Second Meeting of the Rare Diseases Network of the Spanish National Research Council (CSIC), which was held at the headquarters of the Sols-Morreale Institute for Biomedical Research.
The meeting brought together researchers from multiple disciplines to share knowledge and advances in the study of rare diseases, as well as to strengthen networking and jointly advance improvements in care, research, and visibility for these conditions.
Our CEO, Marian Corral, participated in the round table discussion on "Orphan drugs and advanced therapies, " contributing the pharmaceutical industry's perspective on how access to these treatments has evolved in recent years in both Spain and Europe.
At AELMHU, we present the main findings of our Annual Report on Access to Orphan Drugs in Spain 2025, highlighting both the advances in new therapeutic options and the challenges that remain in ensuring that innovation reaches all patients equitably.
The data reflects progress in the incorporation of orphan drugs in Spain, with 20 new treatments funded in 2025. However, we still face key challenges, such as the average waiting time for inclusion in the National Health System, which remains at 23 months.
The meeting also addressed other topics of great scientific relevance to the rare disease sector. For example, advances in innovative therapies were presented and the role that artificial intelligence can play in research into these diseases was analyzed.
