The Spanish Association of Orphan and Ultraphan Drugs we had the honor to close the day '𝗘𝗹 𝗳𝘂𝘁𝘂𝗿𝗼 𝗱𝗲𝗹 𝗮𝗰𝗰𝗲𝘀𝗼 𝗮 𝗹𝗼𝘀 𝗺𝗲𝗱𝗶𝗰𝗮𝗺𝗲𝗻𝘁𝗼𝘀 𝗵𝘂é𝗿𝗳𝗮𝗻𝗼𝘀: '𝗵𝘂𝗺𝗮𝗻𝗶𝘇𝗮𝗻𝗱𝗼 𝗹𝗮𝘀 𝗲𝗻𝗳𝗲𝗿𝗺𝗲𝗱𝗮𝗱𝗲𝘀 𝗿𝗮𝗿𝗮𝗮𝗮𝘀' at the Cervantes Institute Headquarters in Madrid.
In this event, coordinated by the Teófilo Hernando Foundation (FHT) as Administrative and Technical Secretary of the event, and co-sponsored by Laboratorios Sobi and Laboratorios Chiesi, explored key aspects of rare diseases, such as access to drugs to treat these diseases and the human impact they have on people.
It has been our director, Marian Corral, who has represented AELMHU to close the day and to move that We are facing a decisive moment for the pharmaceutical sector where innovation is experiencing significant progress. We are in full reform of the pharmaceutical sector, due to the important legislative reforms that are being carried out at European, national and regional level, and we are beginning to see the results of all the research that the industry has been doing for years.
For this reason, it is essential that all parties involved redouble their efforts. It is by working together that patients will be able to benefit from the new treatments that are about to arrive, and they will be able to do so as soon as possible.
In this context, various experts in the field have made presentations and will participate in discussion spaces set up for the attendees. The first block of the event was called The Future of Access to Orphan Drugs, with the participation of Marta Trapero, Professor and researcher at the Department of Economics and Business at the University of Lleida; Gloria Palomo, Preclinical Evaluator of Advanced Therapies and Vaccines (AEMPS) Member for Spain of the COMP; and Antoni Gilabert Perramon, Director of Innovation and Partnership Area, Consorci de Salut i Social de Catalunya.
The second block was attended by Mónica Rodríguez, representative of FEDER, Julio Zarco Rodríguez, Managing Director of the Hospital Infantil Universitario Niño Jesús and President of the Humans Foundation, and Concepción Martínez, from the Hospital Pharmacy, Hospital U. Infanta Sofía.