The president of AELMHU, María José Sánchez Losada, participated today, February 14, in the Europe Rare Disease Summit 2024 organized in Madrid by Bamberg Health.
This meeting, with international representatives, was attended by agents from the administration, the European Union, the pharmaceutical industry, patient associations and researchers. The topics of the round tables were diverse, allowing to address legislative changes, access and financing of orphan drugs, research, innovation and the role of patients with diseases, among others.
Our president took part in the third panel of the day to talk about "Innovation, financing and access to orphan drugs: Challenges and Opportunities" and address some of the most pressing issues in the treatment of rare diseases today.
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. Also participating at the same table were Luisa Maria Botella Cubells, Head of Translational Research on Rare Vascular Diseases, Centro de Investigaciones Biológicas Margarita Salas (Spain); Adrien Samson, Senior Manager of Health Policy, EuropaBio - European Association of Bioindustries; Elisabetta Zanon, Head of Translational Research on Rare Vascular Diseases, Centro de Investigaciones Biológicas Margarita Salas (Spain); Adrien Samson, Senior Manager of Health Policy, EuropaBio - European Association of Bioindustries; Elisabetta Zanon, Director, EU Public Affairs & Advocacy, Alliance for Regenerative Medicine (Belgium), Enrico Piccinini, Head of Rare Diseases - Europe and Rest of the World,, Chiesi Global Rare Diseases (Italy), Matteo Scarabelli, Associate Director of Market Access, EFPIA - European Federation of Pharmaceutical Industries and Associations (Italy) and was moderated by Fabrizio Checchia, Market Access and Government Affairs Expert, (Italy).
