AELMHU, represented by its director, Marian Corral, has collaborated and participated in the event organized by Bioinnova Consulting at the University Carlos III of Madrid, with the aim of addressing "The future of advanced therapies for rare diseases".
The meeting was inaugurated by César Hernández, Director General of the Common Portfolio of NHS Services and Pharmacy of the Ministry of Health, and Eva Bermejo, Director of the Institute for Research on Rare Diseases of the Carlos III Institute of Health.
The conference was attended by Mireia del Toro, coordinator of the Metabolic Unit of the Pediatric Neurology Service of Vall d'Hebron University Hospital, Mª Teresa Álvarez Román, specialist in Hematology and Hemotherapy of La Paz University Hospital, Manuel Ferro Osuna, head of the Ophthalmology Service of 12 de Octubre University Hospital and Andrés Nascimento, coordinator of the Neuromuscular Pathology Unit of Sant Joan de Déu Hospital to address the future of these therapies from a clinical perspective.
To find out how these types of therapies with orphan designation are being approached in the autonomous communities, the following spoke: Nekane Murga, coordinator of the Personalized Medicine, Precision and Advanced Therapies Area of Osakidetza, Elena Casaus, head of Division of the Advanced Therapies Unit of the Community of Madrid and Icíar Martínez López, Coordinator of the Genetics and Genomics Unit of ibSalut, statutory physician Pharmacy Service of the Hospital Universitario Son Espases and interim deputy of the Pharmacy Service of the Hospital Universitario Son Dureta.
The last panel of the morning dealt with the future of advanced therapies for rare diseases from the perspective of hospital pharmacy with the participation of José Luis Poveda, coordinator of the Advanced Therapies Group and the Rare Diseases Group of the Spanish Society of Hospital Pharmacy (SEFH) and head of the Pharmacy Service of the H. U. P. La Fe Hospital in Valencia; from an economic perspective with Álvaro Hidalgo, health economist, professor and director of the Research Group in Health Economics and Health Management of the University of Castilla La Mancha. La Fe de Valencia; from the economic perspective with Álvaro Hidalgo, Health Economist, Professor and Director of the Health Economics and Health Management Research Group of the University of Castilla La Mancha (UCLM); patients represented by Antonio Cabrera, member of the Board of Directors of the Spanish Federation of Rare Diseases (FEDER) and from the pharmaceutical industry Marian Corral, Director of the Spanish Association of Orphan and Ultra-Orphan Drug Laboratories (AELMHU). Josep Torrent-Farrell, Professor of the Department of Clinical Pharmacology and Therapeutics at the Universitat Autònoma de Barcelona, also took part in this round table.
The event was sponsored by 6 AELMHU members: Biomarin, Chiesi, Csl Behring, Novartis, Ultragenyx and Vertex.