Documentation for patients & families

ERN-ITHACA Documentation

• ERN ITHACA Patient Council Flyer

• ERN ITHACA PAB’s Terms of Reference

• ERN ITHACA PAB’s Terms of Reference – Annexe 1

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)

NEW documentation:

• Accessing treatment abroad: legislation at glance
• Accessing planned treatment abroad: your check-list
• Planned and unplanned treatment abroad: two legal frameworks and their application
• Medical treatment abroad: know your rights
• ERN: A flagship EU action helping patients with rare, low-prevalence, and complex disease

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