The president of AELMHU, Mª José Sanchez Losada has participated in the conference organised by the Bamberg Foundation at the General Council of Medical Associations.
During the forum, the opportunities provided by personalised medicine, the arrival of new therapies for patients with rare diseases, research policies and the equity and accessibility of orphan drugs in Spain were discussed.
The President participated in the second panel of the meeting to discuss current policies in research and Healthcare. Eva Bermejo, Director of the Rare Diseases Research Institute of the ISCIII, Francesc Palau, Scientific Coordinator of the Rare Diseases Strategy of the National Health System, Juan Carrión, President of FEDER and José Luis Poveda, Head of the Pharmacy Service of the Hospital de la Fe, among others, also participated in the panel.
The update of the Rare Disease Strategy, the difficulties and inequity in access to treatments, the role of industry and patients, the current model of evaluation and funding of orphan drugs were some of the topics that came up in the debate moderated by Ignacio de Para Rodríguez-Santana, President of the Bamberg Foundation.
The content of the other roundtables focused on analysing the opportunities of Individualised Medicine and Gene Therapy, the pharmaceutical industry's commitment to rare disease research, and equity and accessibility to orphan treatments.
