Michela Onali
PATIENT REPRESENTATIVE
Michela has been involved in GNE Myopathy and Rare Disease for several years contributing to multi-stakeholder projects and initiatives aimed at fostering early and meaningful patient involvement in basic, pre-clinical and translational research for rare diseases.
She is member of working groups and advisory boards at EURORDIS, ERN Euro-NMD, RD GO FAIR, and EATRIS aimed at supporting and improving collaborative action, direct involvement of patients to expedite research, FAIR data and access to medicines.
Michela has worked in formal and non-formal education in Europe, Turkey, Canada and most recently as Stakeholder Manager at MetabERN, the European Reference Network for Hereditary Metabolic Disorders where she supported the team in all coordination, tactical and strategic actions of the Network until 2023.
Michela has contributed to the development of education resources on patient involvement in scientific research, delivers lectures to patients, students and researchers on early patient partnerships in rare disease research and has been involved as an evaluator in different European funding schemes.
Michela is the recipient of the EURORDIS Volunteer Black Pearl Award 2023, which also recognised the work of Michela in the initiation and development of the ProDGNE project which expanded research efforts for GNE Myopathy to labs in Europe and Canada.
Role in ProDGNE
Michela coordinates and manages project milestones together with FCT NOVA, and is further responsible for all tasks related to internal and external communication. Michela brings the daily life, voice and needs of patients with GNE Myopathy in all decision-making discussions and scientific steps of the project.
