Shared Experience Family Event - Midlands
Bookings have now closed for this event but if you're interested in attending and wish to see if there are still spaces to do so, please contact the office asap on 01789 267520.
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Quicksilver Media Looking For Families Accessing Spinraza To Take Part In Documentary
Quicksilver media are currently making a documentary about the possible implications for drug budgets of any UK-US trade deal, for Channel 4's Dispatches strand, and are looking for families with children who have recently (within the last 4 months) started treatment with Spinraza / nusinersen.
Read full storyBiogen Community Update on DEVOTE Clinical Trial
Announced publicly at the 13th Congress of the European Paediatric Neurology Society (EPNS), the DEVOTE study will evaluate if higher dosing of nusinersen can provide improved efficacy in the treatment of SMA across a broad population of patients.
Read full storyLiving With SMA Launched!
We’re delighted to announce the launch of this brand-new section of our website. It builds on knowledge and advice from the SMA Community and SMA UK’s Support Services Team, and covers a whole host of topics. If you have tips, stories and photos you’d like us to add, please do get in touch and share your experiences.
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