The European Joint Programme on Rare Diseases (EJP RD) has developed, together with a working group led by EURORDIS, named Patient Engagement in Biomedical Research Projects (PENREP), a short guide on Patient Partnership in rare disease research projects.
The main goal of this project, as stated in the guide, is to encourage a prolific and long-lasting relationship between scientists and patient organisations, focusing on the importance of patients as an active part of the research.
This guide will be annaully updated by the working group relying on JTC and EJP RD reviews.
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