Home > For Patients and Families > Patients Documentation Patients Documentation Patient Council Flyer NEW Cross-border healthcare for patients with rare diseases Information points for planned medical treatment abroad – Your Europe (europa.eu) For Ukrainian patients | European Reference Networks – ERNs (erncare4ua.com) EURORDIS Website Join EURORDIS European Patient Advocacy Groups – (ePAG) and connect to ITHACA Charter of the EURORDIS volunteers European Reference Networks (ERN) Guide for patient advocates The involvement of patient organisations’ and patients in the European Reference Networks Short guide on patient partnerships in rare disease research projects ORPHANET Website Orphanet Reports Series / Procedures Search for a patient organisation Patient journey (created by patients themselves) Patient journey: Rett Syndrome, Williams Syndrome, Prader Willi Syndrome, Spina Bifida, Pitt-Hopkins Syndrome Patient journey common needs: Rare congenital malformations + syndromes with intellectual and other neurodevelopment disorders ERN Collaborative Platform Connect to the platform Presentation of ERNs and Communication material In English In French
