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 patients community at the European level? We’re calling for new ePAGs to join our Patient Board to work with other associations, clinicians and researchers on various projects dedicated to rare malformative diseases and neurodevelomental disorders.
Application Process : To apply, send to anne.hugon@aphp.fr the following documents by April 30, 2025. The documents has to be written in English.
- Endorsement Letter from your Patient organisation (see our template HERE)
- Short CV
- Motivation Letter