SMA Care UK was proud to present its work at the SMA Europe Congress 2026 in Budapest, contributing to international discussions on how care for people living with SMA is evolving in the era of disease-modifying therapies.
At the congress, our work on hip management was selected for oral presentation, which was delivered by Professor Giovanni Baranello, featured in the final session of the congress dedicated to standards of care, highlighting its relevance to the global conversation on improving clinical guidance.
Alongside this, we presented a series of posters, including on the project overall and domains currently being developed:
- Spinal management (presented by Jennie Sheehan)
- Respiratory care (presented by Lisa Edel)
- Bone health
- Transition to adult services
These presentations were supported by a strong multidisciplinary presence from across the SMA Care UK network, including:
- Physiotherapists Charlotte Lilien, Katie Nevin, Emer O’Reilly, Anna Rutherford, Jennie Sheehan and Matthew Woods.
- Clinicians Giovanni Baranello, Channa Hewamadduma, James Lilleker, Min Ong, Mariacristina Scoto and Maria Vanegas
It was also a valuable opportunity to connect with colleagues across the wider SMA community, both catching up with Aleks Carver, Adult SMA REACH UK Coordinator and engaging with the wider SMA research and clinical community.
Together, these contributions reflect a coordinated effort to ensure care keeps pace with changing clinical needs and longer, more complex patient journeys.
A consistent message across our presentations was the importance of moving towards individualised, multidisciplinary and lifespan-focused care, with greater emphasis on function, quality of life and patient priorities.
While the congress featured a number of workshops exploring important aspects of SMA care, such as respiratory management, nutrition and future models of care delivery, there were relatively few initiatives presenting comprehensive, consensus-driven standards of care across multiple domains. In this context, SMA Care UK’s programme represents a significant and distinctive contribution to the international conversation.
By sharing this work, SMA Care UK is helping to shape global thinking on how care can be modernised to reflect the realities of the DMT era. We look forward to continued collaboration with international partners to ensure that people living with SMA receive high-quality, consistent care, wherever they live.
