The “Inside the ERNs – Q&A series” puts a spotlight on topics of interest to the rare disease community through short interview-based videos. Each episode features experts and patient representatives, covering key concepts, processes, benefits, and challenges across the full spectrum of rare disease care – from diagnosis to management and physician and patient communication.
This video series has been developed as part of a collaborative effort among various European Reference Networks (ERNs) with the goal of enhancing the outreach of the crucial role of ERNs in pooling expertise and facilitating knowledge sharing about the care and management of rare disorders.
Each episode approaches these topics from two angles: experts provide clear, evidence-based information, while patients and patient representatives offer firsthand perspective on what these processes mean in practice.
Episode overview
- Episode 01 – Introduction to Genetic Counselling
- Episode 02 – Understanding Genetic Testing: to Test or not to Test?
- Episode 03 – The importance of Newborn Screening