Media campaigns

We aim to get as much publicity as possible to raise awareness of SMA and to show the need for the provision of treatment for children and adults with all types of SMA.

Earlier this year we started a media campaign aimed at highlighting the urgent need for swift access to treatment under the Spinraza Expanded Access Programme for all babies and children with SMA type 1. We encouraged families of children with SMA type 1 who wished to tell their story to the media to do so. Many amazing families contacted the media and some of the stories can be found on this page.

https://www.hastingsobserver.co.uk/news/hastings-family-of-toddler-with-life-limiting-condition-call-for-specialist-drug-to-be-more-widely-available-1-7951789/

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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