INTERVIEWS
08-10-2018
Interview with Aitor Aparicio García, Managing Director of the State Reference Centre for the Care of People with Rare Diseases and their Families (CREER)
"Our fundamental objective is to improve the quality of life of people affected by rare diseases and their families".
08-10-2018
Interview Umberto Stefanutti, Managing Director of Vertex Pharmaceuticals
Partner of AELMHU
08-06-2018
Interview with Carmen Laborda. Psychologist at FEDER-Madrid
"Each disease has its specificity, but there are a number of needs that they all share".
08-02-2018
Interview with Encarna Guillén, head of the Clinical Genetics and Rare Diseases research group at the Hospital Clínico Universitario Virgen de la Arrixaca (Murcia, Spain).
"Genetic counselling is going to be a fundamental prevention tool in rare diseases".
08-11-2017
Interview with Julián Isla, Director of Research at the European Federation for Dravet Syndrome
"The main asset of patient groups is the knowledge they have of their disease and their data".
08-11-2017
Interview Sergio Teixeira, Biogen CEO
Partner of AELMHU
08-09-2017
Interview with Giuseppe Chiericatti, General Manager of Chiesi in Spain
Partner of AELMHU
08-06-2017
Interview with Professor Manel Esteller, Director of the Epigenetics and Cancer Biology Programme at the Bellvitge Biomedical Research Institute (IDIBELL).
"One in four rare diseases has alterations in an epigenetic gene".
08-06-2017
Interview with Juan Carrión Tudela, President of the Spanish Federation for Rare Diseases (FEDER)
"Research is our hope, it is the future".
08-03-2017
Interview with Dr. Miguel Ángel Calleja, president of the Spanish Society of Hospital Pharmacy (SEFH)
"Once research has been boosted, we must ensure that patients have access to medicines".
