"It is important to find the balance between early access, safety and treatment outcomes".
"We currently have no patient who cannot be treated".
"OBSER's mission is to generate and share information to improve education, awareness and empowerment of families affected by rare diseases".
"Just over half of the orphan drugs authorised by the EMA are available in Spain".
"The Comprehensive Plan for Rare Diseases in the Region of Murcia is a choral plan".
"No diagnosis doesn't mean we can't help the patient".
Partner of AELMHU
"We coordinate care for patients with rare diseases as they reach adulthood".
"Rare disease patients must receive the same care as any other chronic patient in our healthcare system".
Researcher at the Centre for Applied Medical Research at the University of Navarra