UK SMA Patient Registry

This registry is for patients in the United Kingdom and Ireland with Spinal Muscular Atrophy (SMA).

Currently, there are 713 patients in this registry.

Co-sponsored by the patient organisation Spinal Muscular Atrophy UK.

Spinal Muscular Atrophy Support UK 

 

'Established for over 30 years, we are a charity that supports, campaigns and advocates so that everyone in the SMA community can access the best care, services and treatments and benefit from continued research.'

Nusinersen (SpinrazaTM) Treatment Information Leaflets by SMA UK

November 2019

These leaflets aim to provide a summary for anyone affected by SMA Types 1, 2 or 3 who is considering the possibility of treatment with nusinersen for their child, or themselves. They are intended to be used in your discussions with you / your child's medical team. The leaflets can be found on SMA UK’s website here.