LHON Awareness Day Webinar
18 Nov, 2024
During this year’s World Mitochondrial Disease Week, IMP hosted a free webinar on 19 September for LHON Awareness Day. The theme for the webinar was LHON and Gene Therapy: Where are they now?
With 60 attendees from over 10 countries, the webinar featured six speakers who provided insights and various perspectives on developments in gene therapy for LHON. The speakers included Dr. Magali Taiel (Chief Medical Officer at Gensight), Dr. Li Zhengbin (Commercial and BD Team at Neurophth), Professor Valerio Carelli (Neurologist at IRCCS Istituto delle Scienze Neurologiche di Bologna), Dr. Chiara La Morgia (Neurologist at IRCCS Istituto delle Scienze Neurologiche di Bologna), Julien Seycheron (President of LHON French Association and person living with LHON), and Caroline Pothet (Head of Advanced Therapies and Haematological Diseases for the EMA’s Human Medicines Division).
Dr. Magali Taiel presented on Gensight’s work with Lumevoq gene therapy. Dr. Chiara La Morgia’s presentation gave a clinician’s perspective on gene therapies for LHON while Professor Valerio Carelli’s presentation provided a research perspective. Juilen Seycheron discussed his personal experience living with LHON and receiving gene therapy as part of a clinical trial. Caroline Pothet presented on the EMA’s involvement and role in developing and evaluating gene therapies including those used for LHON. Dr. Li Zhengbin was unable to make the live webinar but recorded his presentation on Neurophth’s work on gene therapy.
With additional time for questions at the end, the webinar provided a space for education and discussion for those affected by LHON and those working within the area.
Watch the recording of the webinar and additional presentation from Dr. Li Zhengbin using the links below —