Build SMA awareness

Despite SMA being the most common genetic cause of death amongst babies, awareness of the condition is limited. Increasing awareness and understanding of SMA amongst the public, and importantly amongst decision makers, is vital in fighting for treatment and the highest standards of care. Below are some examples of recent awareness raising work that TreatSMA members have been involved in. We will also add details of upcoming events and activities.

If you have any ideas for activities to build awareness and would like to discuss them with the TreatSMA team, please get in touch with us – we would love to hear from you! Your involvement in increasing awareness of SMA and the need for access to treatment is hugely appreciated and will make such a difference.

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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