This guide has been developed with the help of a working group comprising of patient representatives and research funders. Its main goal is to encourage fruitful, sustainable and enduring partnerships between scientists and patient organisa tions, co-leading the way for systematic patient-centered research. It also aims to foster a partnership culture and contribute to 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.