Short guide on patient partnerships in rare disease research projects
Created March 2, 2022, 9:58 a.m.
Updated Sept. 19, 2022, 7:49 a.m.
This guide has been developed with the help of a working group comprising of patient representatives and research funders and has been submitted for review by independent academic researchers. Its main goal is to encourage fruitful, sustainable and enduring partnerships between scientists and patient organisations, co-leading the way for systematic patient-centered research in rare diseases research and beyond.