Neuro Numbers: The Neurological Alliance Report

14 March 2019 / Posted in: Information, Support

This new report highlights data including that more than one in six people in England are living with one or more neurological conditions, including SMA. It's being used to call for greater prioritisation of neurology by the health and care system.

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Study to Explore the Quality of Care Received by Children and Young People on Long-Term Ventilation

11 March 2019 / Posted in: Information, Support

This study is currently being conducted by NCEPOD about the quality of care received by those aged 0-24 years on long-term ventilation (including non-invasive). They are looking to hear from both patients and parent carers for their views.

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Neurological Alliance Patient Experience Survey

11 March 2019 / Posted in: Information, Support

The Neurological Alliance is running this survey to find out about the care and treatment for neurological conditions (this includes SMA). The purpose is to provide information which can help them monitor and improve the future quality of health services and social care for people with neurological conditions.

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Rare Diseases: Open Letter to the UK Government

08 March 2019 / Posted in: Treatments & Research

Over 125 patient organisations, including SMA UK, have signed an open letter calling on the UK Government to review and refresh, as a matter of urgency, the UK Strategy for Rare Diseases before the end of 2020.

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Family Attitudes to Genome Editing for Prevention of Heritable Disorders

08 March 2019 / Posted in: Treatments & Research

This study involves an online survey for people aged 18 or over who either have a genetic condition themselves, or have someone in their family who has / had a genetic condition. It's being led by University College London with a closing date of 30th May.

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The Financial and Work-Related Impact of Living with SMA Type 1, 2 or 3 for Unpaid Carers

05 March 2019 / Posted in: Treatments & Research

Thank you to all who responded to this survey, and to Wickenstones for their analysis. The results and the results of our survey last year about the impact of SMA are now available and are being used to inform Biogen’s continuing work with NICE re: access to nusinersen. Read the results summary here.

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Letter Written By Clinicians Highlights Frustrations Around Spinraza Access

04 March 2019 / Posted in: Treatments & Research

The letter, published in The Guardian, highlights the clinicians’ frustrations at Spinraza not being made available on the NHS in England, Wales and Northern Ireland.

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SMA UK Calling for Urgent Access to Nusinersen

04 March 2019 / Posted in: Treatments & Research

On Wednesday 6th March, we will be at NICE’s third committee meeting working hard to express the urgent need for a positive recommendation.

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'Time is Running Out' - Please send this powerful handout and template letter to your MP today

26 February 2019 / Posted in: Treatments & Research

A huge thank you to all who personally gave copies of these and spoke about their lives to MPs at yesterday's Access to nusinersen parliamentary drop-in session. You can contact your MP, asking them to use these to write to NICE, Biogen and NHS England

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Join Ride Scorpion for SMA Join Ride Scorpion for SMA

25 February 2019 / Posted in: Help Us

Join us on 18th May to cycle the Cotswolds and raise vital funds to support people living with Spinal Muscular Atrophy.

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