TreatSMA

Support for the 6th March SMA Vigil

A SMA family, who wish to remain anonymous, kindly donated £1,000 to support the Manchester Vigil. The money is to go towards the necessary preparations – banners, printing work, and so on. Anyone who intends to be there at the Vigil and can help us with preparing banners and accessories, please contact us – funds are there.

Additionally, families who wish to attend the 6th March Vigil and need support with travel costs can apply for financial support. TreatSMA has funding available through Toby Irwin Fund to help families participate in our common battle for access to treatment.

If you have ideas on how to make the world stop and listen about SMA or wish to help in any other way, please get in touch!

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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