Hosts Rhiannon Walls and Inés Hernando talk to Simone Louisse (ePAG advocate at ERN GuardHeart) and Barbara Brunmair (Project Manager at PaedCAN ERN) about how patient representatives involved in the European Reference Networks (ERNs) are sharing relevant information and resources generated by their networks with the local communities. They explore best practices for fast-tracking patients to access much needed virtual specialist advice offered by the ERNs and explore how their personal experiences as members of the rare disease community influence their work in the networks.
