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Consultation About Spinal Muscular Atrophy UK's Priorities

09 October 2018 / Posted in: Information, Treatments & Research, Support

We are now starting to work out priorities for the new organisation, including how and when the funds we hope to raise should be spent. We are very keen to hear the views of as many people in the SMA Community as possible. The survey closes on 11th November.

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Biogen’s ‘Biomarkers’ Research to Find Ways to Tell Whether a Medication Has Been Successful

09 October 2018 / Posted in: Treatments & Research

At the 23rd International Annual Congress of the World Muscle Society, pharmaceutical company Biogen presented the findings of blood tests done on over 300 participants receiving nusinersen in their clinical trials.

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New Results from Biogen’s NURTURE Study of Pre-Symptomatic Infants with SMA

09 October 2018 / Posted in: Treatments & Research

At the 23rd International Annual Congress of the World Muscle Society, pharmaceutical company Biogen announced its latest findings.

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Leonard Cheshire's Change 100 Programme Now Open For Applications

08 October 2018 / Posted in: Information, Support

The Change 100 scheme was launched in 2014 to enable young disabled people to obtain useful work experience and mentoring. Applications are now open until 16th January 2019.

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Campaign to Protect ERNs - Add Your Voice

08 October 2018 / Posted in: Treatments & Research

Genetic Alliance UK has launched a campaign to ensure the UK's continued participation in European Reference Networks (ERNs) following our exit from the European Union.

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Easier Assistance App for Disabled Rail Passengers

28 September 2018 / Posted in: Information, Support

A new smartphone app, currently being trialled by four train companies, will be rolled out across Britain in Autumn next year to help with passenger assistance, with the aim of making it easier for customers to book help at stations and get a more consistent and reliable service.

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AveXis Clinical Trial for Infants Aged Less than Six Months Old with SMA Type 1 in the UK

27 September 2018 / Posted in: Treatments & Research

This Phase 3 study called STR1VE-EU, will evaluate the safety and efficacy of a one-time intravenous infusion of AVXS-101 in approximately 30 European infants.

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Call for Evidence Launched into Social Care Funding in England

27 September 2018 / Posted in: Information

The Lords Economic Affairs Committee has launched its inquiry into the social care system in England and invites written contributions from anyone.

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Baby Loss Awareness Week

26 September 2018 / Posted in: Information, Support

Taking place between 9th and 15th October, this awareness week is a collaboration between 60+ charities across the UK to raise awareness about the issues affecting those who have experienced pregnancy loss or death of a baby in the UK.

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Public Registration: NICE Technology Appraisal Advisory Committee Meeting

24 September 2018 / Posted in: Treatments & Research

NICE have announced that the public registration facility to observe the next committee meeting about nusinersen on 23rd October will open on 25th September 2018 on their website.

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