…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), Paula Morandi (International Mito Patients (IMP)) & 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.
Paula Morandi is Chair of International Mito Patients (IMP), an Italian patient advocate and author living with Leber Hereditary Optic Neuropathy (LHON), a rare mitochondrial disease that led to legal blindness following her diagnosis in 1992.
For more than 30 years, she has been actively involved in social inclusion, disability rights and patient advocacy. She is a member of Mitocon, where she represents patients affected by mitochondrial eye diseases, and has served as a patient representative within ERN-EYE. She has also completed several EURORDIS training programmes, including the Summer School, Winter School, Leadership School and Digital School.
Paula has contributed to the development of patient care pathways for LHON in Italy and has spoken at numerous national and international conferences and events on mitochondrial and rare eye diseases. In 2020, she helped establish the first LHON World Awareness Day and later became the LHON Patient Representative for IMP.
Her advocacy has brought her to institutions including the Italian Senate and, in February 2026, the European Parliament in Strasbourg, where she spoke during a Rare Disease event. She is also involved in the ERN-EYE working group developing the LHON Patient Care Pathway and in work on LHON best practices.
Through her role as Chair of IMP, Paula continues to advocate internationally for greater awareness, improved care and a stronger patient voice in mitochondrial diseases.
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.