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