If you or your child live in England, have SMA Type 3 and have lost the ability to walk, please respond to this survey

20 November 2020 / Posted in: Treatments & Research

If NICE recommends that England's MAA for nusinersen should change to include you / your child, would you want to access this treatment? NHS England and the Neuromuscular Centres need to be ready for the possibility of a positive recommendation for change. SMA UK has agreed to put out this brief survey (closes 13th December) to help with any potential future planning. This does not guarantee a positive recommendation will be made.

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How is Covid 19 Affecting SMA UK Now?

18 November 2020 / Posted in: Information, Support

An update on where SMA UK is at the moment in terms of staffing and our services, and changes we've made, as well as a thank you to the Community for all your continued support.

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Accessible Housing Crisis

18 November 2020 / Posted in: Information, Support

The Housing Made for Everyone (HoME) coalition is calling on the government for urgent action to tackle the UK’s accessible housing crisis by raising the mandatory building standards. Individuals and organisations can have their say by responding to the consultation, via an online survey, before the deadline of 1st December.

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DBC Petition: 'Don’t Leave Disabled People Behind’

17 November 2020 / Posted in: Information, Support

More than 119,000 people have signed a petition calling for the two million disabled people, lone parents and families who receive legacy benefits, to stop being denied the £20 a week uplift that millions on Universal Credit were given at the start of the pandemic. It was handed to the Chancellor today, ahead of the spending review.

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Free Advice on Legal Challenges to Health and Welfare Disputes

16 November 2020 / Posted in: Information, Support

Genetic Alliance UK are hosting this session with Kirsty Stuart from Irwin Mitchell Solicitors who will be offering free, practical advice and answering any questions. Taking place Tuesday 24th Nov at 10am.

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New Survey: Stakeholder and Public Involvement at the UK NSC

16 November 2020 / Posted in: Information, Support

Public Health England would like to find out your views on how the UK National Screening Committee involves stakeholders (people and organisations with a professional or particular personal interest in screening) and the public in its work. Closes 13th December.

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Out of the Shadows - Report by The Neurological Alliance

12 November 2020 / Posted in: Information, Treatments & Research, Support

This new report, launched today, is calling for better treatment and care for the 150,000 children and adults living with a rare neurological condition, including SMA, in England.

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Big Social Care Survey 2020

10 November 2020 / Posted in: Information, Support

The Care and Support Alliance are running this survey to find out what it has been like needing care, in England, during the pandemic. It should take around 15 minutes to complete, and closes on 4th December.

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SMA UK's and MDUK's Joint Submission to NICE as to Whether they Should Recommend that NHS England Funds Risdiplam

04 November 2020 / Posted in: Treatments & Research

Thank you to those of you who completed the survey we ran about your views on this - they were crucial for the submission we made. The first committee meeting is scheduled for 11th May 2021. You can see the submission and survey results through here.

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I:DNA Immersive Art Installation

02 November 2020 / Posted in: Information, Treatments & Research, Support

Prof Felicity Boardman has done extensive research on the social and ethical implications of genomic medicine from the perspectives of people with genetic conditions. I:DNA is a virtual, immersive art installation which is an artistic representation of all this research. You can ask questions ahead of a live Q&A on 11th November.

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