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UK SMA Patient Registry Update

We are delighted to announce changes in the UK SMA Patient Registry! These developments will see the collection of information from adults and parents of children and young people living with SMA about their experience of daily life, their activities and quality of life. Also known as patient-reported outcome measures or PROMs, this information will be captured in short online questionnaires in the patient registry.

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Scottish NHS to Fund Risdiplam

We are so pleased to announce that the Scottish Medical Consortium has released its decision to fund Risdiplam for use on the NHS in Scotland to treat 5q SMA.

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TreatSMA on Tour – U.K.

It is becoming more apparent than ever that there is a lack of access to physiotherapists for children and adults in the community that specialise in SMA or have knowledge of and training in the condition.

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