Patient Partnership Webinar - Unlocking ERN Potential: Disease Specific Measures

The increasing recognition and diagnosis of rare diseases over the past decade have led to a growing body of knowledge within specialised clinical teams and centers. This expansion is evident in the European Reference Networks (ERN), which connect over 1,600 clinical teams from more than 300 specialised hospitals in the EU/EEA region. The challenge now is to transform this collective expertise into real-world evidence that can enhance diagnosis, care, and treatment. The key lies in developing disease-specific outcome measures that reflect the effectiveness of care and treatment for each rare condition. These measures provide a common framework for experts to share knowledge and learn from each other, effectively turning the networks into a knowledge-sharing system. This webinar presents examples of such measures, their development, and the crucial role of patient representatives, demonstrating the benefits observed by the Networks through this approach.
Presentation slides can be found here: download2.euro...