The D'genes Association has organized the XV International Congress on Rare Diseases in Murcia, at the headquarters of the Catholic University of Murcia, on November 3 and 4. The title of the meeting this year was: "Equity and rights for people with rare diseases".
Once again, AELMHU has been present to support this initiative. An essential event in the sector that has brought together a large group of experts in rare diseases among which were: Manuel Posada de la Paz, Research Professor at the Instituto de
Carlos III Health Institute; Eva Bermejo Sánchez. Director of the Rare Diseases Research Institute of the Instituto de Salud Carlos III; Mireia del Toro Riera, assistant physician of Pediatric Neurology, coordinator of the Metabolic Diseases Unit and of the Commission of Rare Diseases of the Instituto de Salud Carlos III; Mireia del Toro Riera, assistant physician of Pediatric Neurology, coordinator of the Metabolic Diseases Unit and of the Commission of
Minority Diseases and researcher of the Pediatric Neurology research group of the VHIR of the Vall d'Hebron Hospital; or Belén Pérez González, of the Molecular Diseases Diagnostic Center of the Autonomous University of Madrid.
The director of AELMHU, Marian Corral, participated in the first panel of the day together with Juan Carrión, President of D'genes; Isabel Pineros, Director of the Access Department of Farmaindustria; Gloria María Palomo Carrasco, preclinical evaluator of the Department
of Medicines for Human Use of the Spanish Agency of Medicines and Health Products (AEMPS); and Daniel de Vicente, President of the ASMD association and member of the board of directors of FEDER, to talk about the difficulties in access to orphan drugs.
