LIRH Annual Conference 2025

Nuria Albareda
Núria Albareda is an experienced Clinical Development professional with over 20 years in the pharmaceutical industry. A chemist by training, she has developed her career within leading multinational companies, gaining solid expertise in clinical development and clinical operations across multiple therapeutic areas. She has actively contributed to multidisciplinary project teams and collaborated closely with key corporate functions as well as external partners and affiliates. Throughout her career, Núria has led global clinical programs and supported regulatory submissions, fostering innovation and collaboration in complex development environments.

Father Bernardo
Father Bernardo was born in Florence in 1968 where he completed his university studies, graduating with a thesis dedicated to the early humanism of that city. Since 1996 he has lived in the Abbey of San Miniato al Monte, of which he has been the father since 2009. From that monastery he contributes to the spiritual and cultural life of Florence. In 2019 he preached the spiritual exercises to Pope Francis and the Roman Curia, whose meditations were included in a volume published by San Paolo. Piemme recently published a book written in the form of a dialogue with a mother who lost a child on the reasons for hope and the ways of consolation.

Marco Castori
Marco Castori is currently the Head of the Medical Genetics Unit at the Casa Sollievo della Sofferenza Research Hospital and the Unit Leader for the regional rare disease network at the same institution. He is particularly interested in hereditary connective tissue disorders and Ehlers-Danlos syndromes, for which he is the Institutional Representative at ERN ReCONNET and ERN-SKIN. Dr. Castori is the coordinator of the Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders Disease Group at ERN ReCONNET.

Raffaella Cesaroni
Raffaella Cesaroni is a journalist and host for Sky TG24, where she has been the face of the news and press review since 2003. Specialized in scientific and health issues, since December 2022 she has edited and hosted HEALTH, the weekly program dedicated to health and healthcare. Throughout her career, she has conducted numerous investigations and cover stories on crucial topics such as vaccines, sepsis, autism, immunology, fake news in medicine, and global health, interviewing prominent national and international figures. She has received several awards for her commitment to scientific dissemination, including the National "Communicating Cancer" Award, the AIOM "Giovanni Maria Pace" Journalism Award, and the Assobiotec Media Award.

Barbara D'Alessio
President and CEO of the LIRH Foundation, she earned a law degree from Sapienza University of Rome, followed by a Master's degree in Marketing Management and a Master's degree in Patients' Advocacy Management. She has over 20 years of experience in the nonprofit sector in management, planning, communications, and international relations. She has been active in the Huntington Community since 2012.

Kelly Damm
As Senior Manager, Patient Advocacy, at Wave Life Sciences, Kelly works to incorporate the patient voice into decision-making and activities at Wave. With a goal of helping to deliver transformational therapies for people living with both rare and common disorders, Kelly facilitates collaboration between Wave employees and the community, including individuals, families and the advocacy organizations that support them.

Svetlana Jevtic
Svetlana Jevtic is a Senior Clinical Development Director at Novartis with more than two decades of global clinical development experience and an academic background in veterinary medicine. She has shaped strategy and led studies in rare neurologic diseases, with a particular focus on Huntington’s disease, and is deeply engaged in advancing the votoplam program in close collaboration with key opinion leaders and patient groups.

Nicoletta Locuratolo
Nicoletta Locuratolo is a neurologist with specific expertise in neurodegenerative disorders, particularly dementia, Parkinson's disease, and rare diseases affecting movement. She gained clinical and research experience at Sapienza University of Rome. She is currently a senior researcher at the Dementia Observatory, National Center for Disease Prevention and Health Promotion, of the Istituto Superiore di Sanità (ISS), where she conducts research, evaluation, and technical-scientific support for national policies on dementia and Parkinson's disease. She developed the Guidelines "Diagnosis and Treatment of Dementia and Mild Cognitive Impairment," published in 2024. She currently collaborates on the activities of the ISS Dementia Fund for Competence, with a focus on training programs for healthcare professionals and caregivers, dementia prevention, and the production of technical documents for the Permanent Dementia Committee. She is responsible for ISS training courses aimed at disseminating and implementing the Guideline.

Meghan Miller
Meghan received her PhD in Biomedical Sciences, Pharmacology from the University of California, San Diego, USA. With a drive to focus on neuroscience and rare diseases, she moved to Basel, Switzerland where she began her drug discovery career at Roche Pharma, first as postdoc in the Neuroscience, Pharma Research and Early Development (pRED) team, and then as a project leader in the Rare Diseases group, also under pRED. In 2019, Meghan joined Skyhawk Therapeutics, where she is currently Executive Director of Translational Science, and a core member of the Huntington’s Disease clinical development team.

Maria Salvina Signorelli
Maria Salvina Signorelli, psychiatrist and psychotherapist, associate professor of psychiatry at the University of Catania, and director of the Catania School of Specialization in Psychiatry. Research interests include mood disorders, consultation and liaison psychiatry, and adolescent psychopathology.

Ferdinando Squitieri
Ferdinando Squitieri is a neurologist with a PhD in neurobiology. He has been studying Huntington's disease, including its juvenile form, for over 30 years. He heads the Huntington's and Rare Diseases Unit at the Casa Sollievo Sofferenza Research Hospital in San Giovanni Rotondo and the Department of Neurology at the CSS Mendel Institute in Rome. He is also co-founder and scientific director of the Lega Italiana Ricerca Huntington Foundation (LIRH), as well as an associate researcher at the National Research Council (CNR).

Patrizia Spadin
Patrizia Spadin is the President of the Italian Alzheimer's Association (AIMA). A journalist, she lives and works in Milan. She founded AIMA in 1985 and has since fought for the right to care for Alzheimer's patients and for the right to quality of life for their families. She is a recognized stakeholder in welfare policies related to dementia.