Skip to content

If you or a family member has been recently diagnosed with SMA, this often comes as a shock and can be difficult for everyone involved.

At SMA UK, we work with leading clinicians from the UK and Europe using their expert knowledge to help us create informative guides and provide the most up to date information in various formats that will help navigate a recent diagnosis of SMA.

SMA UK’s Support & Outreach Team is here to support you and your family at this time so please do not hesitate to get in touch with them.

If you want to know more about the latest updates on treatments and research, please see here.

If your baby has been part of the Oxford/Thames Valley-based SMA newborn screening study and been diagnosed with SMA, please talk to your baby’s clinical team about the diagnosis and what this means for you and your child. You can also discuss with them which pages on our website may still be useful for you.
Image shows parent / carer's hand holding a baby's hand.

Hearing Your Baby’s Diagnosis of Spinal Muscular Atrophy

This is for parents / carers whose baby (aged 0-12 months) has recently been diagnosed with SMA. It covers the emotional aspect of receiving the diagnosis and some suggestions of who can provide support.

Image shows a doctor holding a parent / carers' hands in support.

Hearing Your Child’s Diagnosis of Spinal Muscular Atrophy

This is for parents / carers whose child has recently been diagnosed with SMA. It covers the emotional aspect of receiving the diagnosis and some suggestions of who can provide support.

Sidney

Looking after your Child who has SMA Type 1

This guide covers more about the practical side of caring for your child.

Image shows child who has SMA Type 2 reading a book

Looking after your Child who has SMA Type 2

This guide covers more about the practical side of caring for your child.

Bobby Allen at school

Looking after your Child who has SMA Type 3

This guide covers more about the practical side of caring for your child.

Image shows an adult man who has SMA, standing with his partner outside his house.

Adult Onset SMA – Diagnosis and Care

This guide is for adults who have had a recent diagnosis of an adult onset form of SMA.

Image shows a young child with SMA Type 2 in a highchair with a tray, playing with toys.

Toys & Activities for Babies and Young Children

Our booklet for practical tips and suggestions for safe and practical play for different ages and stages.

Child with SMA Website card

Emergency Care for Children

This information sheet will assist clinical staff at A&E services in local hospitals with their assessment of the needs of a child with SMA.

Image shows stethoscope and clipboard.

Who’s Who of Professionals

This lists some of the health, education and social care professionals that you are likely to have contact with over time.