TreatSMA

Survey exploring the effects of catching Covid-19 in people with, and carers of people with, SMA

It is felt there is not enough data in terms of covid-19 in Spinal Muscular Atrophy, therefore we would appreciate it if people who have had covid-19 within the SMA community could fill out one or both of these surveys.

There are two surveys, one for people with SMA and one for parents/carers of people with SMA. If you are a parent/carer filling in the survey and yourself, and the person you care for, have had covid-19 please fill out both surveys.

You can fill out the surveys on the links below, your answers will help us build a picture of how covid-19 effects people with SMA.

Latest Posts

  • Calling on all the community to ACT NOW to avoid losing treatments!

    Calling on all the community to ACT NOW to avoid losing treatments!

    Currently, there are two approved treatments for SMA: risdiplam and nusinersen. These treatments were initially approved temporarily under Managed Access Agreements while the NHS and NICE gathered data to assess their cost-effectiveness. Now, as these agreements come to an end, both treatments face a crucial review.

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  • NICE’s upcoming Multi Technology Assessment for Spinraza and Risdiplam

    NICE’s upcoming Multi Technology Assessment for Spinraza and Risdiplam

    SMA UK are proud to join together with Treat SMA and MDUK to bring you this webinar about NICE’s upcoming Multi Technology Assessment for Spinraza and Risdiplam. 2024 sees the end of the managed access agreements (MAAs) for the two treatments. An expert committee will gather to assess the new clinical and real-world evidence, along…

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  • Let the battle begin

    Let the battle begin

    This year the Managed Access Agreement for Spinraza and Risdiplam expires. The MAA was put in place five years ago so the pharmaceutical companies could gather more evidence to resubmit to NICE for approval on the NHS with Biogen extending their MAA by a year.

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