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Spinal Muscular Atrophy Type 1

Our SMA Type 1 Information sheet provides a brief overview of the causes, effects and management of the condition. Looking after your baby shares the experiences and suggestions of parents and families.

Nusinersen for children with SMA Type 1: Information for Families aims to help parents decide if they want to ask their medical team to assess whether their child could potentially benefit from, and be eligible for, this treatment and, if so, how it can be accessed.

Sources of information about SMA Type 1 and support can be found on our Route Map: diagnosisgenetics; care planning; health; equipment; transport; housing; leisure activities and holidays; financial and legal; education; employment; emotional and social support. 

Toys, Play and Activities for Babies with SMA is a helpful resource, as is the similar information sheet for health, education and social care professionals: ‘Toys and Play for Babies and Children with Spinal Muscular Atrophy – A Guide for Professionals’.

The New International Standards of Care for SMA provide a summary of guidelines for health professionals. You can find these here. We are working with Treat-NMD and other international patient groups to produce a family-friendly version. You may also find it helpful to read the summaries from our April 2018 standards of care workshops led by expert health professionals. You can find these here.

Sadly, some families will be Facing Bereavement. These information sheets talk about this and the support available.