Urgent Call For Action - Please Contact Your MP Today About The NICE Committee Meeting on 8th May

01 May 2019 / Posted in: Treatments & Research

Following yesterday's announcement to say access to nusinersen is now to be considered at a private fourth NICE committee meeting, we need to pull out all the stops and ask our MPs to write to all parties urging them to reach an agreement on access for all.

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Update from NICE re Nusinersen

30 April 2019 / Posted in: Treatments & Research

Update from NICE re nusinersen: The outcome of discussions, following the meeting on 6th March, and the consequences for access to nusinersen, will be considered by the committee on Wednesday 8th May.

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'Corporate Reputation of Pharma, 2018' Global Report

18 April 2019 / Posted in: Treatments & Research

The 'Corporate Reputation of Pharma, 2018' Global report is based on the findings of a PatientView November 2018-February 2019 survey exploring the views of 1,500 patient groups worldwide.

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AveXis Data Reinforce Effectiveness of Zolgensma™ in Treating Spinal Muscular Atrophy (SMA) Type 1

17 April 2019 / Posted in: Treatments & Research

Interim data from Phase 3 clinical trial of Zolgensma (STR1VE) suggest that infants on the gene therapy product live longer and achieve significant developmental milestones.

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SMA Europe Reports on its Activities

16 April 2019 / Posted in: Treatments & Research

SMA UK is a member of SMA Europe which held its three-day AGM in Bucharest on 4th-6th April. There were reports on SMA Europe's achievements in the year to date, new organisations were welcomed and current and forthcoming plans were outlined.

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Information and Support over Easter

10 April 2019 / Posted in: Information, Support

We are sorry we are unable to stay open for phone or email enquiries over the Easter bank holiday. Find out where you can find information about SMA and support during this time.

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DCP - Survey about the impact of caring for a disabled child

10 April 2019 / Posted in: Information, Support

Disabled Children's Partnership are looking to hear from those with parental responsibility for disabled children and young people (from birth to the age of 25) to complete their survey about the impact that caring for their child has had on them and their families. Closes 28th April.

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Long-Term Assessment of Salbutamol in SMA Type 3

10 April 2019 / Posted in: Treatments & Research

This latest article from our Clinical Care Research Correspondent, Dr Alex Murphy, discusses how Tiziano and colleagues studied individuals with SMA taking salbutamol over a one year period.

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Non-Muscle Related Effects of SMA

09 April 2019 / Posted in: Treatments & Research

Read this article by our Clinical Care Research Correspondent, Dr Alex Murphy, about research by Lipnick and colleagues who used a novel way to look at some of the non-muscle related effects of SMA.

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Survey: Accessing Cervical Screening (Smear Test) with a Physical Disability

04 April 2019 / Posted in: Information, Support

Disability Rights UK and Jo's Cervical Cancer Trust are running this survey to find out about experiences in accessing cervical screening (smear test), as well as what provisions are available to enable accessing screening.

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