Our bi-monthly ePAG – meeting in September raised several issues, especially around the ERS Congress in Vienna. First of all, the presence of ERN-LUNG was much appreciated, and the ERN-LUNG event on the last day very well attended. The Transplantation Working Group session also attracted patient representatives looking for new developments in that field. However, the question of non-accessibility to some sessions for patient representatives seems to be a hot topic. For regulatory reasons, patients are not allowed to enter sessions and the exhibition area where pharmaceutical industry involved.ย Patient representatives ask ERN-LUNG and EURORDIS to propose a distinct status for endorsed patient representatives, in opposition to patients seeking for direct cure and medication.
