European Patient Advocacy Groups (ePAGs) are essentiels to ERNs. Their mission is to be the voice of patients and their families in all the different projects carried out by ITHACA. Within our network, ePAGs and specialists, whether doctors or researchers, work hand in hand towards the same goal: improving the lives of those with rare […]

On behalf of the organizers, we are pleased to invite you to participate in the First Global and Fifth International Symposium Rare Diseases Day 2025 „ More than you can imagine – more than you can dream of!” organized on the occasion of the Rare Disease Day by Regional Specialized Children’s Hospital in Olsztyn and […]

The European Commission has just published a special ERN booklet to promote European Reference Networks. This document provides an overview of the 24 networks and showcase their achievements into the rare diseases field. For its writing, each ERN was asked to share three success stories to show how our networks concretly and conclusively impact patient […]