SMAcademy
SMAcademy is a SMA Europe capacity building initiative for patient advocates in SMA. SMAcademy provides patient advocates with tools to amplify their efficacy and impact when advocating for a better life for people living with SMA.
Co-create. Peer exchange. Expert opinion.
Patient advocates need knowledge across areas of expertise, from understanding SMA to medicine development, regulatory processes, policy, and access. They also need a vast skillset to bring people together, lobby with key stakeholders, and increase the impact of their organisations. At the same time, patient advocates also have a wealth of hands-on and first-hand experience advocating and living with SMA that makes them invaluable experts in the field.
Through a variety of learning opportunities, SMAcademy provides a global platform for patient advocates to:
Learn Together. Teach each other.
SMAcademy Advisory Board
- Charlotte Lilien
Researcher, Pediatrics Research, Oxford University - Jan Geissler
CEO and Patient Advocate, WECAN/Patvocates - Melissa Bowerman
Researcher, Keele University School of Medicine - Moumita Ghosh
Founder/Director of Event and Family Support, CureSMA India - Eva Stumpe
DGM/Delegate at SMA Europe; SMA Europe Treasurer - Dana Mierlut
Patient Advocate, Communications Working Group, SMA Europe - Jana Popova
SMA Europe, SMAcademy
SMAcademy Learning Opportunities
- Global SMAdvocacy Event
- Webinar: “The evolving of SMA genetics in the new therapeutic era” with Prof. Eduardo Tizzano.
- Webinar: “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.
- Webinar “SMN function in adults living with SMA: current and future perspectives” with Prof. Tom Gillingwater
- Webinar: “Sexual and Reproductive Health in People Living with SMA”, with Dr. Lorelei Thornburg and Dr. Natan Bar Chama
- Webinar: “SMA Newborn Screening White Paper Update How Far We’ve Come”
- Webinar: "Understanding the new EU Joint Clinical Assessment and its possible implications."
- Morning Session: “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, Health communication and advocacy advisor.
- Afternoon Session: “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, Health communication and advocacy advisor.
- Workshop: “Design, launch, impact: how to run a successful awareness campaign.”
Upcoming
The list will be updated with the upcoming webinars once scheduled.