INTERVIEWS
Interview with Elena Arcega, president of Albi España
"As part of World Primary Biliary Cholangitis (PBC) Day, we spoke with the president of the Albi Spain Patients' Association, Elena Arcega."
Interview with Álvaro Hidalgo, President of the Weber Foundation
"A more holistic economic evaluation of orphan drugs is needed" Álvaro Hidalgo. Professor of Fundamentals of Economic Analysis. Faculty of Legal and Social Sciences, University of Castilla-La Mancha. President of the Weber Foundation.
Interview with Beatriz Muñoz Cabello, coordinator of the Andalusian Plan for the Care of People Affected by Rare Diseases (PAPER)
"It is important to find the balance between early access, safety and treatment outcomes".
Interview with Enrique Galán Gómez, co-author of the Comprehensive Plan for Rare Diseases in Extremadura 2019-2023.
"We currently have no patient who cannot be treated".
Interview with Lara Albacete Rosado. Social researcher. OBSER (FEDER)
"OBSER's mission is to generate and share information to improve education, awareness and empowerment of families affected by rare diseases".
Interview with Jorge Mestre-Ferrándiz, first author of the article "Analysis of the evolution of access to orphan drugs in Spain".
"Just over half of the orphan drugs authorised by the EMA are available in Spain".
Interview with María Teresa Martínez Ros, Director General of Planning, Research, Pharmacy and Citizen Services of the Region of Murcia.
"The Comprehensive Plan for Rare Diseases in the Region of Murcia is a choral plan".
Interview with Francesc Palau, Director of the Paediatric Institute for Rare Diseases at the Hospital Sant Joan de Déu in Barcelona
"No diagnosis doesn't mean we can't help the patient".
Interview with María José Sánchez Losada, Managing Director of Csl Benring
Partner of AELMHU
Interview with Mónica López, coordinator of the SEMI's Minorities Group
"We coordinate care for patients with rare diseases as they reach adulthood".
