Leading the change by prioritising patients' needs: Effèmerides

Introduction. The purpose was to develop shared positions on specific issues between patient representatives and institutions to influence policymakers based on meeting outcomes and highlights.

Materials and methods. Thematic online meetings were held on topics including European Regulation on orphan drugs, ATMP, job inclusion for PLWRD, and Serious Disabilities with representatives from patient organizations, experts, stakeholders, and a group coordinator. Relevant materials were disseminated before meetings, and final reports were shared and amended by participants before publication.

Results. Each table's results were condensed into an editorial series called Effèmerides of UNIAMO, launched during Rare Disease Day. The Serious Disability position paper influenced the Minister of Labor and Social Policy, and other positions led to hearings and were widely shared in webinars and meetings. About 40 patient organization representatives and 30 stakeholder representatives participated, with an audience of about 70 at a public event.

Conclusion. Small working groups proved efficient for addressing relevant topics. Meetings will continue in various formats, and the editorial series will serve as a reliable information source and policy-making basis.

Key messages.

1. Small working groups effectively address relevant patient issues.
2. The Effèmerides editorial series consolidates meeting outcomes for policymakers.
3. Collaboration with ministries and stakeholders leads to impactful policy influence.