GUIDI: Istituzione di un Osservatorio permanente sulle malattie rare

This legislative proposal aims to create a permanent observatory dedicated to monitoring and studying rare diseases. The goal is to improve the coordination of healthcare services and ensure better data collection to support patients suffering from uncommon medical conditions. This initiative primarily affects patients with rare diseases and healthcare providers. It seeks to streamline diagnosis and treatment pathways, ensuring more equitable access to specialized care across different regions.