Update on Access to Zolgensma Treatment in England

16 March 2021 / Posted in: Treatments & Research

Following the announcements on Monday 8 March 2021, we wanted to clarify how the NHS England announcement relates to the NICE draft recommendations, especially how they potentially enable different groups of children to access Zolgensma. We have therefore been in touch with NHS England asking for an update and to clarify as much as is possible at this stage.

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Update on progress of the NICE Type 3 evidence review

15 March 2021 / Posted in: Treatments & Research

The nusinersen clinical eligibility criteria review is progressing as planned to the anticipated timeline. Patient groups and clinicians met in March 2021 with NICE. The NICE website now states that publication of the final guidance is expected in June 2021.

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Contact Survey: Share your Experience of Access to Covid-19 Vaccines

10 March 2021 / Posted in: Information, Support

Contact is building a picture of access to Covid-19 vaccines for unpaid carers, disabled young people and shielding children. Please consider taking 5 minutes to complete their short survey to help Contact push for further access to Covid-19 vaccines. The survey closes at 9am on Monday 15th March.

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Thank You

09 March 2021 / Posted in: Information, Treatments & Research, Support

Following yesterday's announcements, SMA UK would like to thank all those involved.

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SMA PhD Partnership - SMA UK and MDUK

09 March 2021 / Posted in: Information, Treatments & Research

SMA UK and MDUK are delighted to announce our SMA PhD Partnership! Applications are now open for one 4-year PhD studentship in 5q SMA research as part of Muscular Dystrophy UK’s Grant Round 2021, and close at 5pm on Tuesday 1st June 2021.

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NHS England Announces Access to Zolgensma for Eligible Children who have SMA Type 1

08 March 2021 / Posted in: Treatments & Research

NHS England’s announcement of this landmark agreement is positive news for parents of some children who have SMA Type 1 who may now be eligible for access to this one-time gene therapy.

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SMA Gene Therapy Treatment Zolgensma Accepted for Restricted Use within NHS Scotland

08 March 2021 / Posted in: Treatments & Research

The Scottish Medicines Consortium has just announced the positive news that it has accepted Zolgensma for restricted use for SMA Type 1 within NHS Scotland. This follows NHS England’s and NICE’s announcements earlier today. Read further details, including about eligibility.

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NICE Releases its Evaluation Consultation Document (ECD) on Zolgensma in England

08 March 2021 / Posted in: Treatments & Research

NICE has backed NHS England’s announcement this morning to fast-track the introduction of this innovative gene therapy so that it becomes available in England before NICE publishes its final guidance. So that NICE can complete its appraisal of the treatment, it’s ECD is now available on their website and is open for anyone to comment by the closing date of 5pm Tuesday 6th April 2021.

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New £30m Fund to Install Changing Places toilets in Existing Buildings across England

05 March 2021 / Posted in: Information, Support

Local authorities will soon be invited to ‘opt in’ to receive a proportion of the £30m funding, based on need, to install facilities in their communities. The move follows changes to statutory guidance that came into effect from January 2021 that made the provision of Changing Places toilets compulsory in certain new buildings.

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We've Launched a Podcast!

01 March 2021 / Posted in: Information, Support

We're excited to have launched our brand-new SMA UK podcast, with people affected by SMA sharing their personal experiences, tips and advice on all things 'Living With SMA'. The first episode - 'Mental Health and Wellbeing during COVID-19' – is available to listen to now. Follow and subscribe today!

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