Newly diagnosed?

If you have just received a diagnosis of SMA for yourself or your child and don’t know what to do next,

  1. Read all the information on our website
  2. Meet other SMA families in the TreatSMA Facebook group, our fantastic SMA Community, and ask them any question that comes to your mind.
  3. Familiarise yourself with SMA Route Map, so that you know what to expect
  4. Get in touch with the Outreach Service of SMA Support UK if you’d like to receive peer support
  5. Discover the Care sections of following websites: SMA Support UK, CureSMA. Proper care is crucial in SMA and you will have to learn a lot!
  6. Ask your doctor for Spinraza treatment. If no treatment is available, get in touch with us to talk about other options.
  7. Join our fight to make SMA treatments available in the UK for everyone.
  8. Always, if you have questions, get in touch with us!

Remember: YOU ARE NOT ALONE.

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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