Understanding the ecosystem of patients with lysosomal storage diseases in Spain: a qualitative research with patients and health care professionals.
Juan de Dios García-DíazMónica López-RodríguezMontserrat Morales-ConejoAntoni Riera-Mestrenull nullPublished in: Orphanet journal of rare diseases (2022)
Our data shows that there are still UNs to be addressed from the perspective of patients and HCPs. The main UN is accelerating diagnosis, which could be achieved by medical awareness and education, according to clinicians. A more comprehensive disease management was another main point to be worked on to improve LSD-patient experience and quality of life.