Michela Onali

Michela Onali’s advocacy work for GNE Myopathy began in 2014 while living in Canada, allowing her to develop a broad knowledge and have a direct look into the reality and challenges faced by the RD community not only in Europe but also in US and Canada, from national health policies to R&D and approaches to rare diseases in general. After moving back to Europe, she completed the EURORDIS Summer and Winter Schools, the Nutrimet School on Metabolomics and the EUPATI training course. She is involved in working groups aimed at implementing patient engagement in research development and decision-making. Michela Onali advocates to facilitate dialogue, report on patients’ needs, guarantee effective and clear information, and to define research priorities while promoting the fundamental role of Natural History Studies and FAIR data in clinical trial design and therapy development.

Contact me at pab@ern-euro-nmd.eu