Spinal Muscular Atrophy (Europe)

Established in 2022 by SMA Europe, the Spinal Muscular Atrophy (SMA) PSP worked with people who live with SMA, carers and healthcare professionals to identify uncertainties about spinal muscular atrophy. SMA is a rare, genetic neuromuscular condition which causes progressive muscle atrophy and weakness, leading to loss of movement. 

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

The Spinal Muscular Atrophy PSP Top 10 were announced at the 4th International Scientific and Clinical Congress on Spinal Muscular Atrophy in March 2024.

Key documents

Spinal Muscular Atrophy PSP protocol

Spinal Muscular Atrophy PSP Steering Group terms of reference