Our president, Maria Jose Sanchez Losada, has participated in the II Conference on Rare Diseases organized by the University Hospital 12 de Octubre in Madrid on the occasion of the celebration of World Day for Rare Diseases.
The event, inaugurated by Dr. Carmen Martínez de Pancorbo González, Managing Director of the Hospital Universitario 12 de Octubre, Maria Jose Sanchez Losada, President of the Spanish Association of Orphan and Ultra Orphan Drug Laboratories(AELMHU) and Isabel Motero Vázquez, Director of the Spanish Federation of Rare Diseases (FEDER) and its Foundation, is part of the activities organized on the occasion of World Rare Disease Day.
In the different presentations, we have been able to listen to experts on highly topical issues, such as artificial intelligence in the care of patients with rare diseases or developments in cardiological, neurological and oncological rare diseases.
The day ended with the presentation of awards to three patient associations: the Spanish Federation of Hereditary Metabolic Diseases, the Association of Neurotransmitter Diseases and the Spanish Association SATB2, for their contribution to improving the quality of life of people with rare diseases.
The prize for the most innovative drug 2022-2023 was also awarded to Pfizer's tafamidis ('Vyndaqel') and a runner-up prize to Alexion's selumetinib ('Koselugo').
