AELMHU, in collaboration with the National Association of Health Informers (ANIS), has organized a training day for communication professionals to discuss Rare Diseases in Spain, common challenges and future projections.
Olga Fernández Castro, journalist and ANIS board member, was in charge of leading the meeting and moderating the debate.
In the first block of the day, María José Sánchez, president of AELMHU, briefly explained what an orphan drug is, its development and the latest data on access to this type of treatment in our country.
Next, Juan Carrión, president of FEDER, took the floor to talk about rare diseases from the perspective of the patient and the associative movement in Spain.
Thirdly, Jorge Mestre, health economist and associate professor at the Carlos III University, spoke to explain the system for evaluating and financing orphan drugs.
The round of presentations ended with the participation of Susana Navarro, CIEMAT researcher, who shared her experience and knowledge on advanced therapies for rare diseases.
At the end of the four presentations, there was a round of questions, the reading of conclusions and a family photo.
The meeting was held at the Madrid Press Association and could be followed in person and online free of charge, with prior registration.
