Welcome to newsRARE, a Scientific dissemination magazine focused on rare diseases. The publication, developed by Fundación Weber, was created in 2016 with the aim of generating knowledge and serving as a meeting point and reference for these rare conditions.
This questionnaire is divided into two parts-first, a general section exploring the current situation and recent developments in rare‑disease care, and second, a specific section on outcome‑based payment models and the use of technological innovation in orphan drugs and advanced therapies.
Your responses will be completely anonymous, and the results will be presented only in aggregated form. It will not take more than 10 minutes to complete. The results will be published in the upcoming issue of newsRARE, scheduled for July 2025 (www.newsrare.es).
