SMAcademy learning opportunities & webinars

Completed webinars:

• September 2026: “Long-term responses to disease-modifying treatments in SMA”, with Tina Duong
• June 2026: Patient Experience Data: Turning Lived Experience Into Meaningful Data, with Nicole Gusset and Steve Bourke
• Feb 2026: Present and Future of Gene Therapy, with Serge Braun. 
• Nov 2025: Modern Approaches to Managing Orthopaedic Challenges in SMA, with Michail Kokkinakis and Luca Labianca. 
• Jan 2025: Understanding the new EU Joint Clinical Assessment and its possible implications, with Paolo Morgese and Tresja Bolt.
• Dec 2024: SMA Newborn Screening White Paper Update How Far We’ve Come with Liesbeth De Waele, Michelle Levene, Marie-Christine Ouillade and Joaquim Brites. 
• Nov 2024: Sexual and Reproductive Health in People Living with SMA, with Lorelei Thornburg and Natan Bar Chama.
• July 2024: SMN function in adults living with SMA: current and future perspectives, with Tom Gillingwater.
• April 2024: Are SMA registries suitable to be used for regulatory decisions? Results of a pilot study conducted by EMA, with Prof. Laurent Servais, Neil Bennet, and Mencía de Lemus,with Laurent Servais, Neil Bennet, and Mencía de Lemus.
• April 2024: The evolving of SMA genetics in the new therapeutic era, with Eduardo Tizzano.

Completed workshops:

• May 2025: Design, launch, impact: how to run a successful awareness campaign, with Emilia Debska. 
• March 2025: Empowering Advocacy and driving change in adult SMA care: Leveraging the "Care for adults living with SMA in Europe" benchmarking report, with Anne-Pierre Pikaert (part 1, part 2)