Leading the change by prioritising patients' needs: Effèmerides
Simona Bellagambi1✉, Annalisa Scopinaro2
- 1 Foreign Delegate of UNIAMO Rare Diseases Italy, Federazione Italiana Malattie Rare
- 2 President of UNIAMO Rare Diseases Italy, Federazione Italiana Malattie Rare
Received 2 November 2026 · Accepted 10 November 2026 · Published 10 November 2026
DOI: https://doi.org/10.5281/zenodo.24115539
Article PDF · Original poster (PDF)
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Key messages
- Small working groups effectively address relevant patient issues.
- The Effèmerides editorial series consolidates meeting outcomes for policymakers.
- Collaboration with ministries and stakeholders leads to impactful policy influence.
Abstract
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.
Original poster
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