Spinal Muscular Atrophy (Europe)

Established in 2022 by SMA Europe, the Spinal Muscular Atrophy (SMA) PSP will work with people who live with SMA, carers and healthcare professionals to identify uncertainties about spinal muscular atrophy. The scope of the PSP will include treatments (e.g., effect on different populations, gender/ age; long-term effects), management and care, as well as wellbeing and participation.

Spinal muscular atrophy (SMA) is a rare genetic condition that makes the muscles weaker and causes problems with movement.

The image below is of the PSP Steering Group member, Jane Velkovski.

 

 

Key documents

Spinal Muscular Atrophy PSP Protocol

Spinal Muscular Atrophy PSP Terms of Reference