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Latest Updates on Global Access to Nusinersen

18 June 2018 / Posted in: Treatments & Research

We have asked Biogen to keep us updated with this latest information as we all continue to advocate for broad access in the UK.

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Carers: Your Right To Request Flexible Working Hours

14 June 2018 / Posted in: Support

Carers UK have information on their website and a free, downloadable guide on your right to request flexible working.

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Roche Update: SUNFISH Trial Not Going Ahead In The UK

14 June 2018 / Posted in: Treatments & Research

We have received the following update from Roche about the SUNFISH study, investigating RG7916 in people with SMA Types 2 or 3, which will now not be recruiting in the UK.

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Petition to End the Care Crisis

12 June 2018 / Posted in: Support

After surveying nearly 4,000 adults of all ages who need care or who look after someone with care needs, the Care and Support Alliance (CSA) discovered that people are unable to get the basic care and support they need. Add your voice to their campaign and sign the petition.

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First Cohort Dosing Completed in SRK-015 Phase 1 Clinical Trial

08 June 2018 / Posted in: Treatments & Research

Pharmaceutical company Scholar Rock has announced that dosing of the first cohort has been completed in a Phase I trial of the experimental drug, SRK-015.

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SMA Matters Spring 2018

31 May 2018 / Posted in: Support

Follow the link to download the Spring 2018 edition of our SMA Matters (previously known as 'Inspirations') newsletter.

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Helpful Podcasts

31 May 2018 / Posted in: Support

Contact have a number of helpful podcasts available to listen to on their website. Their latest is by one of their helpline advisers who explains what happens when a young person who is on Disability Living Allowance turns 16.

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Roche Community Update: Olesoxime

30 May 2018 / Posted in: Treatments & Research

Due to negative long-term effects, Roche have decided to halt further development of their drug olesoxime. They have provided this community statement.

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Registration for the Public Gallery for the 27th June NICE Committee meeting

25 May 2018 / Posted in: Treatments & Research

This opens on 30th May and closes 13th June. The meeting will discuss access to nusinersen and be held in Manchester. We understand that there are only 30 places available.

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Shoesday 2018 Shoesday 2018

24 May 2018 / Posted in: Help Us

Take part in a Shoesday with your clasSMAtes to help raise money and awareness of SMA! It's easy to do; pick a date, get everyone to wear odd shoes to school and donate to SMA Support UK.

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