Anne Hugon | EU Project Manager
ERN ITHACA

Anne Hugon – Bio Sketch With over 30 years of commitment to rare diseases, Anne Hugon brings a dual perspective as both a patient advocate and a healthcare system professional. She is currently Project Manager for ERN ITHACA at AP-HP (Paris Public Hospital), coordinating European initiatives focused on rare genetic disorders—particularly neurodevelopmental and malformative syndromes—with strong expertise in patient-centered innovation, training, and cross-border cooperation. Anne is the Founder and current Vice President of the Association Française de Glycogénose (AFG), and has been a leading voice for people living with Glycogen Storage Diseases. Internationally, metabolics disorders, she represents AFG within the International GSD Network and has served as a EURORDIS ePAG advocate of MetabERN, with a focus on patient empowerment and governance. She is actively involved in several national and European institutions, including the French Ministry of Health, the Biomedicine Agency, the High Authority for Health (HAS), and the French Rare Disease Alliance, contributing to policies that advance patient engagement and integrated care in rare diseases.