INTERVIEWS

12-2020

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 Álvaro Hidalgo, President of the Weber Foundation
04-2020

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 Beatriz Muñoz Cabello, coordinator of the Andalusian Plan for the Care of People Affected by Rare Diseases (PAPER)
02-2020

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 Enrique Galán Gómez, co-author of the Comprehensive Plan for Rare Diseases in Extremadura 2019-2023.
07-2019

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 Lara Albacete Rosado. Social researcher. OBSER (FEDER)
06-2019

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 Jorge Mestre-Ferrándiz, first author of the article "Analysis of the evolution of access to orphan drugs in Spain".
02-2019

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 María Teresa Martínez Ros, Director General of Planning, Research, Pharmacy and Citizen Services of the Region of Murcia.
02-2019

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 Francesc Palau, Director of the Paediatric Institute for Rare Diseases at the Hospital Sant Joan de Déu in Barcelona
02-2019

Interview with María José Sánchez Losada, Managing Director of Csl Benring

Partner of AELMHU

Interview with María José Sánchez Losada, Managing Director of Csl Benring
11-2018

Interview with Mónica López, coordinator of the SEMI's Minorities Group

"We coordinate care for patients with rare diseases as they reach adulthood".

Interview with Mónica López, coordinator of the SEMI's Minorities Group
11-2018

Interview with Dr. Miguel García Ribes, coordinator of the semFYC Working Group on Clinical Genetics and Rare Diseases.

"Rare disease patients must receive the same care as any other chronic patient in our healthcare system".

Interview with Dr. Miguel García Ribes, coordinator of the semFYC Working Group on Clinical Genetics and Rare Diseases.