Parliamentary “drop in” event dedicated to SMA

An event dedicated to the situation of SMA Families will take place on 25th February in the Parliament. Please invite your MP!

Muscular Dystrophy UK and SMA UK will be jointly arranging a “Drop In” event in the Parliament to highlight the problem with access to treatment for people with spinal muscular atrophy. The event will take place on Monday 25th February in the House of Commons and will be hosted by Mary Glindon MP, Chair of the All-Party Parliamentary Group for Muscular Dystrophy.

Please urgently reach out to your MPs and encourage them to attend the event – you can find your MP’s contact details using our MP Search Tool.

For more details, read here.

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.

    Read more

  • 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…

    Read more

  • 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.

    Read more