On 15 April, the first meeting took place between the new board of directors of AELMHU (Spanish Association of Orphan and Ultra-Orphan Drug Laboratories) and FEDER, entities that have a long history of collaboration. AELMHU was represented by Aurora Berra and Rosabel Arce, president and director, respectively, and FEDER by its president, Juan Carrión, and María Tomé, Head of Communication and Fundraising.
The meeting was held a few days after AELMHU presented its new board of directors, led by Aurora Berra, Sobi's general manager for Spain and Portugal. The vice-presidents are Sérgio Teixeira, general manager of Biogen Spain, with a degree in Pharmacy and more than 15 years of experience in the pharmaceutical industry; Stefanie Granado, general manager of Takeda Iberia, and David Beas, general manager of Actelion.
The Board of Directors underlined the need to improve the visibility of rare diseases, especially by informing about the value of orphan and ultra-orphan treatments. Rosabel Arce, Director of AELMHU, stressed that "AELMHU is going to give a new impetus" by incorporating new actions focused on improving its work and efforts "to ensure rapid and equitable access for patients to diagnosis and, subsequently, to therapy, both at national and regional level". In this sense, he adds, "a clear and rapid process is needed to shorten the timeframes for funding" and to try to reduce the "existing inequalities between autonomous communities in aspects relating to access to treatment".
