Establishing Patient Registries for Rare Diseases: Rationale and Challenges
Published 24 May 2020 Globally, an estimated 350 million people are affected by a rare disease diagnosis. Knowledge limitations persist for the majority of rare conditions due to systemic and structural challenges in healthcare and research. Disease-specific patient populations are often small and geographically dispersed; funding support for research is restricted; and diagnostic delays are commo
https://www.lupop.lu.se/article/establishing-patient-registries-rare-diseases-rationale-and-challenges - 2025-07-05