Our director, Marian Corral, has been present at one of the tables of the II Conference on Rare Diseases in Jaén, organized by the association +Visibles to discuss the "Challenges and Opportunities in the access to orphan drugs.
An opportunity to put, once again, the focus on all the legislative changes planned in Spain on the regulation of drugs, and which were announced in the publication of the Government's Regulatory Plan for 2023. Among them, the director highlighted the Law amending the revised text of the Law on Guarantees and Rational Use of Medicines and Medical Devices, the Royal Decree regulating the evaluation of healthcare technologies and the Royal Decree regulating the financing and pricing of medicines and medical devices and their inclusion in the pharmaceutical provision of the National Health System. And also those that will come from the European Union with the new European Pharmaceutical Strategy and the new Regulation on orphan and pediatric drugs.
A meeting in which we have also been able to listen to interesting presentations such as Dr. Eva Bermejo-Sánchez, director of the Institute for Disease Research of the Carlos III Institute of Health, Dr. Yolanda de Diego Otero, the president of FEDER, Juan Carrión, Carmen Sáez, president of the association Objetivo Diagnóstico, Dr. Javier Blasco, coordinator of the Andalusian Plan for Rare Diseases of the Andalusian Government and other health professionals from Andalusia.
Our thanks to all the patients who gave their testimonies, to Dr. Concha Sierra Córcoles, neuropediatrician at the University Hospital of Jaén (honored at the conference) and to Pedro Lendinez Ortega for the invitation and organization of the event.