The National Institute for Health and Care Excellence (NICE) has published details of its findings for the next stage for tofersen in the regulatory process. While it has recommended tofersen should have a technology appraisal, NICE has said it does not meet all the criteria for the Highly Specialised Technology route.

My Name’5 Doddie Foundation is disappointed with this decision and like our colleagues at MND Association, we are concerned that this will seriously affect the accessibility of the drug for people with MND in the UK. We are working with MND Association and Biogen to lend our voice to this issue. We will provide updates when they are available, or you can refer to the MND Association’s website.

For more information on tofersen, see our previous news update.

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