The president of AELMHU, María José Sánchez Losada, participated in the Europe Rare Disease Summit 2023 organized in Madrid by Bamberg Health.
The international meeting brought together representatives of the administration, the European Union, the pharmaceutical industry, patient associations and researchers. The topics were divided into several panels throughout the day to address legislative changes, access and financing of orphan drugs, research, innovation and the role of patients with diseases, among others.
María José took part in the second panel of the day to talk about access and financing of treatments together with the lawyer Jordi Faus, Tina Taube, Thomas HOls, Elisabetta Zanon, Soumeya Bekki and Fabrizio Checchia, moderator of the table. During her presentation, the president analyzed the data of the latest Report on Access to Orphan Drugs in Spain, recently published by AELMHU, identifying challenges and briefly explaining some of the proposals that AELMHU has already submitted to the Ministry of Health, in view of the imminent changes that may result from the reform of the Law on Guarantees and Rational Use of Medicines and a Royal Decree for the financing and price of medicines. In the words of the president, María José Sánchez, "we are in a situation with room for improvement, but also at a time when we are beginning to see evident changes when it comes to facing the challenges of access to orphan drugs, which we did not see in the past".