…TIMESLOT: Thursday 17 September 2026, 16:00 CEST
…MAIN TITLE: Patients’ Perspectives: Activities and Unmet Needs
…PRESENTERS: Dr. Manuela Lavorato (Azienda Ospedaliera Universitaria Pisana, U.O.C. Neurologia, Italy) & Tamara Shepherd (AFM-Téléthon, France)
…MODERATOR: TBA
Dr. Manuela Lavorato, PhD, is the ERN EURO-NMD Work Package 7 Project Manager at the University Hospital of Pisa (AOUP).
She has extensive experience in translational research on mitochondrial diseases and myopathies, gained at the Perelman School of Medicine, University of Pennsylvania, and the Mitochondrial Frontier Program at the Children’s Hospital of Philadelphia (CHOP), where she served as an Assistant Professor and currently collaborates as a Scientific Consultant.
In her current role as ERN EURO-NMD WP7 Project Manager at the AOUP, she leads patient-centered initiatives in partnership with Patient Advocacy Groups and Neuromuscular Disease (NMD) and mitochondrial disease associations, focusing on the development of Patient-Reported Outcome Measures (PROMs), Patient Journeys, and clinical guidelines to enhance care for individuals with NMDs.
Tamara Shepherd is an International Affairs Project Officer at AFM-Téléthon, where she contributes to the development and coordination of international initiatives in the field of neuromuscular diseases.
Within ERN EURO-NMD, she works closely with the Patient Advisory Board (PAB) and patient representatives, supporting their involvement and participation in the Network’s activities. Her work helps strengthen the patient voice and foster collaboration between patient representatives, healthcare professionals and other stakeholders across Europe.