Supporting the continuous development and use of a patient partnership framework in European rare disease networks (ERNs): a scoping review of frameworks in the scientific literature

https://link.springer.com/article/10.1007/s12687-024-00763-2 Journal of Community Genetics Supporting the continuous development and use of a patient partnership framework in European rare disease networks (ERNs): a scoping review of frameworks in the scientific literature EURORDIS Board Member Graham Slater and EURORDIS ERN & Healthcare Director Inés Hernando are co-authors of a newly published scoping review on patient partnership frameworks in European Reference Networks (ERNs). The study, which analyses frameworks from the scientific literature, highlights key learning points to enhance the ERN Patient Partnership Framework and strengthen meaningful patient engagement in rare disease networks.