From 13-14 September, the ePAG Steering Committee met in Brussels, with Dalia Aminoff and Serena Bartezzati representing eUROGEN.
Birute Tumiene, a geneticist from Vilnius University Hospital Santaros Klinikos, and Representative of Lithuania in the ERN Board of Member States (BoMS), gave an update on the integration of ERNs into national health systems. This is not only about referring complex cases for virtual consultations, it is also about sharing and disseminating knowledge and expertise on therapeutic options and treatments available outside the ERNS, as well as clinical guidelines and best practices.
The group had a joint discussion about the patient-clinician partnership in ERNs. ePAGs have to make sure their Coordinator understands that patient representatives give added value to an ERN: a different perspective based on living with the disease 24 hours a day.
In groups, the Steering Committee reviewed the Draft Recommendations made by EURORDIS on the integration of ERNs into national health systems, to see if changes or edits were required. A plenary debate was then held to agree on the Recommendations and their wording.
Work began on building a Communications Roadmap for ePAGs, in order to give patient representatives important working tools in this area.
The second day of the meeting consisted of a training session on presentation skills, including presentation styles, effectiveness, and how to prepare memorable content.