Global SMAdvocacy Event
Budapest, Hungary
11 March 2026
Empowering SMA Advocates Worldwide
The Global SMAdvocacy Event is a flagship SMAcademy initiative by SMA Europe, designed to strengthen the global community of SMA patient advocates. It brings together representatives from SMA organisations around the world to share experiences, exchange best practices, and jointly develop solutions to the most pressing challenges faced by people living with SMA. The event aims to enhance the effectiveness and impact of SMA patient advocates worldwide.
The first Global SMAdvocacy Event in 2024 gathered 70 patient advocates from 63 organisations, representing 50 countries and 6 continents.
Why the Global SMAdvocacy Event Matters
Despite major scientific and therapeutic advances, the global SMA landscape remains highly unequal. Many countries still face significant barriers to diagnosis, standards of care, and access to medicines. Patient organisations, often working with limited resources, have expressed a growing need for collaboration, shared learning, and stronger advocacy capacities. The Global SMAdvocacy Event addresses this need by creating a dedicated space for mutual learning and exchange. Helping patient advocates amplify their impact in dialogue with institutions, regulatory bodies, clinicians, and industry partners.
Patient advocates are the force behind many achievements for people living with SMA. At the Global SMAdvocacy Event, patient advocates from all over the world have come together to learn and grow stronger together.
Goals of the Event
The event aims to foster:
- Exchange of experiences, successes, and challenges in SMA patient advocacy. Collaborative knowledge building, identifying gaps and developing solutions on access, care, and policy.
- Definition of future advocacy priorities and strategies.
- Capacity building through mutual learning and practical skill-sharing.
- Networking opportunities among patient advocates and organisations worldwide.
In 2026, the event will focus on advocacy topics such as access to therapies and policy advocacy, research and evidence generation, quality of life and multisystem needs, but also on how to build an effective advocacy organisation by learning from each other.
The event will start at 8.00 and end after lunch.
Your SMA Europe team
In case you have any questions, please contact us!
Carolina Pachecoy: carolina.pachecoy@sma-europe.eu
Alice Larotonda: alice.larotonda@sma-europe.eu
Medicongress event team: sma-europe.events@medicongress.com