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EJP RD has produced a Short guide on patient partnerships in rare diseases research projects

EJP RD has produced a Short guide on patient partnerships in rare diseases research projects

2020-10-06
EJP RD has produced a Short guide on patient partnerships in rare diseases research projects

This guide will support applicants to describe the role and added value of patient partnerships in research proposals

The EJP RD Short guide on patient partnerships in rare diseases research projects aims to encourage fruitful, sustainable and enduring partnerships between scientists and patient organisations, co-leading the way for systematic patient-centered research.

The creative process has been performed  by a working group led by EURORDIS comprising of patient representatives and research funders and reviewed by independent academic researchers. This project has contribute to settle a partnership culture and encourages an improved understanding of the added value of patient engagement and involvement in basic, pre-clinical, translational and social research for the Rare Disease Community in Europe and beyond.

Further information about this short guide is available at this link: https://www.ejprarediseases.org/wp-content/uploads/2020/08/SHORT-GUIDE-ON-PATIENT-PARTNERSHIPS-IN-RARE-DISEASE-RESEARCH-PROJECTS.pdf