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 malformative syndromes & neurodevelopmental disorders.
We are constantly striving to strengthen this patient-physician partnership, and to further build our ePAG community. A rich and efficient network of associations is a valuable tool for patients and their families.
You are part of an association of patients with the scope of ITHACA and would you like to represent your patient community at the European level? We’re calling for applications to join our Patient Board to work with other associations and doctors on various projects.
Here are a few examples of the discussions to which you could contribute: a patient-clinician workshop to exchange perspectives on the transition of care from youth to adulthood next December in Dublin; a patient-clinicial round table on the theme of neurodevelopmental disorders in April 2024 in Lisbon; the drafting of various guidelines…