Tag: Patient Public Involvement and Engagement (PPIE)

P066986-205445

Survey re-opened: help pinpoint where consultancy makes the biggest difference in rare disease research

Community input invited on practical consultancy needs in rare disease research.
EDERA WODC & GAM - Preview- JVDPhotography-1-min

ERDERA at WODC Europe 2025: wrap up and next steps

Sharing patient‑centred methods, early diagnostics, and data‑driven trial innovation to accelerate rare disease research across Europe.
WODC27102025

ERDERA’s workshop draws strong engagement at WODC Europe

Enhancing active patient involvement and data models across rare disease research.
ERDERA group photo from the workshop

Multi stakeholder workshop advances prioritisation of rare diseases for ATMP development

A practical framework in the making
International Patient Organisation for Primary Immunodeficiencies IPOPI

Patients as equal partners – ERDERA’s vision echoes in Brussels

ERDERA's

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