TreatSMA

Tickets are still available for this fantastic event.

Come and join us for a night of fun, family, community and celebration.

Please come and join us at ‘Cirque Du Spinraza’ a party that the Annabelle Rose Foundation has arranged for the 3rd August (all info in link)

The SMA community has acheived so much over the last two and a half years in terms of getting access to Spinraza. We have so much to celebrate and we also have a community that we need to stick together and continue the fight for those who are currently excluded and for access to other emerging treatments to come in the future.

The Annabelle Rose Foundation has supported and helped TreatSMA through our journey so far, so it is only right that we raise a glass, and have a great time together.

The TreatSMA Team

 

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