The President of the Spanish Federation for Rare Diseases (FEDER) shared experiences and experiences with organizations such as the Association of Spanish and Andalusian Lipodystrophies Hemophilia Association
This day was organized by pharmaceutical company Lilly with the aim of involving patients so they can delve into the daily work of scientists
Last Friday, November 22, Juan Carrion, President of the Spanish Federation for Rare Diseases (ERDF), was present at the Open Day III on Clinical Research.
In these days, Carrión shared views and experiences with rare disease entities as the Spanish Association Lipodystrophies (AELIP), the Andalusian Association of Hemophilia, the Spanish Association against Leukodystrophy, the Spanish Scleroderma Association, the Madrid Association of patients Lupus and friends, the Madrid Association of Cystic Fibrosis, National Pulmonary Hypertension Association, the Association of Rare Disease Genes D', the Spanish Federation of Hemophilia and the Spanish Federation of Lupus
About a hundred patients, representing 50 organizations from across Spain, analyzed their role in the development of new drugs.
Furthermore, in order to show the human side of clinical research, along this journey three views about clinical research were exposed from the patient's perspective.
These vision of Spanish Leukodystrophy Association (ELA Spain) that explained how since its institution have supported and enhanced the development of a clinical trial in collaboration with the main investigation was.