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Eurordis - Rare Disease Europe


Recommendations on the required capabilities for patient engagement

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This online course provides recommendations on the competencies (understood as knowledge, skills and behaviours) and resources that each stakeholder organisation should aspire to have in place in order to plan, implement and evaluate meaningful and sustainable patient engagement activities across the medicines lifecycle.

This course is based on one of the main outcomes of the IMI funded multi-stakeholder consortium PARADIGM (Patients active in research and dialogues for an improved generation of medicines). The Patient Engagement Toolbox centralises all PARADIGM’s co-created recommendations, tools and relevant background information to make patient engagement in medicines development easier for all. This course focuses on a specific guide: Recommendations on the required capabilities for patient engagement

This online course does not address the specific competencies of the patient participants involved in patient engagement activities.

Learning Objective

The objective of this online course is to increase the preparedness of stakeholder organisations by identifying the capabilities required by those individuals involved in implementing patient engagement activities and the resources (processes, tools and systems, organisational structure) needed within the organisation.

Experts that contributed to this course

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Maria Cavaller, EURORDIS

Maria is part of the EURORDIS Patient Engagement team. She manages the process of patient engagement in medicines development procedures at the European Medicines Agency (EMA), mainly protocol assistance and coordination of patient engagement for European initiatives namely PARADIGM, C4C and MoCA. She also supports the work of the members of the EURORDIS Therapeutic Action Group, and work on topics linked to therapeutic development.


Virginie Hivert, EURORDIS

Joined EURORDIS in June 2014. Referent for EURORDIS’; activities related to the development of medicines for people living with rare diseases, patient empowerment (e.g. EURORDIS Summer School) and patient engagement in medicines development. Since June 2022, she has been appointed as one of the Civil Society representatives on the Europen Management Agency Management Board. At global level, she is involved in the International Rare Diseases Research Consortium (IRDiRC) since its inception in 2011.

Virginie has 20+ years of work experience in research and healthcare, including 14 years in the rare diseases field – hospital, research lab, academia, European Medicines Agency (as expert) and patient organisation. Notably, prior to joining EURORDIS, she worked 6 years at Orphanet, the international database on rare diseases and orphan drugs (INSERM, France).




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