The executive director of the Spanish Association of Laboratories for Orphan and Ultra-Orphan Drugs (AELMHU), Marian Corral, accompanied the Spanish Federation of Rare Diseases (FEDER) at the institutional event on rare diseases held at the Madrid Assembly.
The event, opened by the president of the Assembly, Enrique Ossorio, was attended by representatives from all parliamentary groups: Belén González Moreno (VOX), Sara Bonmatí (PSOE), Nora San Martin (Más Madrid), and Marta Marbán (Partido Popular). The meeting highlighted the importance of dialogue between government agencies, professionals, patients, and industry to address the challenges still facing rare diseases.
The FEDER association network in the Community of Madrid, comprising 135 organizations, took center stage at the meeting, led by Sara González Navarro of the Spanish Foundation for Prion Diseases; Aldha Pozo, from the 22q11 Syndrome Association; and Roberto Guerra, from the Spanish Ichthyosis Association. The patients brought to the table the challenges and concerns of the more than 3 million people living with rare diseases in Spain.
