This practical “Short Guide on Patient Partnerships in Rare Disease Research Projects” was created by the European Joint Programme on Rare Diseases (EJP RD) to show scientists, funders and patient organisations how to build meaningful, two-way collaborations in basic, pre-clinical, translational and social-science studies.
It explains why early and sustained patient involvement boosts relevance, impact and funding success, and provides concrete examples, check-lists and real-life testimonials to help consortia avoid common pitfalls and design truly patient-centred projects.
Key publication details
• Full title: Short Guide on Patient Partnerships in Rare Disease Research Projects – Basic, Pre-clinical, Translational & Social
• Authors: Working Group “Patient Engagement in Biomedical Research Projects” (PENREP), chaired by EURORDIS and convened under the European Joint Programme on Rare Diseases (EJP RD).
• Scientific reviewers: Prof. Hanns Lochmüller (CHEO Research Institute, Canada) and Prof. Danny Huylebroeck (KU Leuven, Belgium).
• First publication date: July 2020
• Publisher/Imprint: European Joint Programme on Rare Diseases (EJP RD), Paris (FR).
Access this publication here.
