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Developments in research and the possibility of treatments has brought great hope to many, but the most severe forms of SMA can still be life-threatening.

We hope that some of the experiences shared by parents and carers here will be of some support during such a sad time.

Our Support & Outreach Team is also here for you, even if you haven’t been in contact with us before now. You can contact us by email or phone 01789 267520.

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Family Experiences of SMA Bereavement

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Bereavement and Memories of Babies who had SMA Type 1

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Bereavement and Memories of Children who had SMARD1

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Bereavement and Memories of Adults who had SMA