On 29th April 2026, more than 70 clinicians, researchers, allied health professionals, patient representatives and charity partners came together in Newcastle for the first SMA Care UK Annual Meeting.
The meeting marked an important milestone for SMA Care UK, celebrating progress made during the project’s first phase while bringing together the national SMA community to help shape the next generation of UK standards of care.
Throughout the day, delegates heard updates from the Respiratory, Hip, Spine, Transition and Bone Health Working Groups, alongside the launch of new workstreams focusing on Emergency Care and Exercise. Interactive breakout sessions allowed participants to contribute directly to the development of future guidance, ensuring recommendations remain practical, evidence-based and relevant to clinical practice.
A major milestone: Respiratory Care Guideline endorsed
One of the highlights of the meeting was the announcement that the SMA Care UK Respiratory Guideline had received endorsement from the British Thoracic Society.
This represents the first completed guideline within the project and an important step towards improving respiratory care across the UK.
Learning from partners and building collaboration
The meeting also provided an opportunity to learn from Duchenne Care UK, explore approaches to meaningful patient involvement and strengthen alignment between SMA Care UK and national and international initiatives.
International speakers from Australia, Denmark and the United States shared their experiences of developing national standards of care, providing valuable insights into implementation, collaboration and opportunities to align future work while avoiding unnecessary duplication of effort.
Keeping people with SMA at the heart of guidance
Patient involvement remained central throughout the meeting.
Sessions explored how the lived experience of people with SMA should continue to shape guidance development, with discussions focusing on reducing survey fatigue, improving accessibility and ensuring that patient feedback leads to meaningful change.
Feedback from attendees
Feedback demonstrated the success of the meeting, with delegates praising both the organisation and the opportunity to collaborate across disciplines. The highest-rated aspects of the meeting were the interactive breakout sessions, multidisciplinary networking and the chance to contribute directly to the future development of SMA Care UK guidance.
The meeting concluded with agreement on priorities for the next phase of the project, including completion of current guidance documents, development of Emergency Care, Exercise and Reproductive Health guidance, continued engagement with patients and professionals, and planning for implementation across the NHS.
Looking ahead
The first SMA Care UK Annual Meeting demonstrated the strength of collaboration across the UK SMA community and the shared commitment to improving standards of care. As the project enters its next phase, work will continue to develop new guidance, support implementation across the NHS and help ensure that everyone living with SMA has access to consistent, high-quality care, wherever they live.
Thank you to all of our speakers, delegates, working group members, patient representatives and partner organisations for sharing their expertise and experience throughout the meeting.
We also gratefully acknowledge the support of our funders, Biogen, Roche and SMA UK, whose funding enables the SMA Care UK programme and its ongoing work to improve standards of care across the UK. The content of SMA Care UK guidance is developed independently by multidisciplinary clinical experts and patient representatives.
Find out more
To learn more about SMA Care UK, our working groups and the latest guidance developments, click here
