Work and Pensions Committee Inquiry into the Disability Employment Gap

27 January 2021 / Posted in: Information, Support

Thank you to the young adult network members who worked with us in December to submit a response to the questions raised. We also drew on the experiences others have relayed to our Support Services Team.

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National Strategy for Disabled People: Survey Launched

22 January 2021 / Posted in: Information, Support

The public survey is a chance for disabled people and their carers, friends and family, to share views and life experiences. The responses will help the government understand the barriers faced by disabled people and what it can do to improve disabled people's lives.

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NCB - Living Assessments Recruitment

15 January 2021 / Posted in: Information, Support

Are you a young person or parent with experience of having had a social care assessment? Living Assessments is a five-year project from the National Children's Bureau looking at the decision-making process for providing social care support to children and families, the impact of that support, and the lived experiences of assessments.

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Adept Field Solutions - Research Project

15 January 2021 / Posted in: Information, Support

Market researchers Adept Field Solutions are running a project, sponsored by a pharmaceutical company, seeking the views of people in the UK who are living with SMA and their families / partners / caregivers. Those who take part will receive £50.

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First patient treated in Biogen’s global RESPOND study of nusinersen, following treatment with Zolgensma™

11 January 2021 / Posted in: Treatments & Research

The Phase 4 open-label, multicentre study will examine the clinical benefit and safety of nusinersen treatment in infants and children with SMA who have unmet clinical needs following previous treatment with Zolgensma.

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AMRC - Write to Boris Johnson to Save Charity-Funded Medical Research

11 January 2021 / Posted in: Information, Treatments & Research, Support

AMRC has reported on the devastating impact of covid on medical research charities who have had to make drastic cuts to their research funding. You can sign AMRC's letter calling for the Government to provide vital funding support to protect medical research and patients.

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New UK Rare Diseases Framework Published January 2021

10 January 2021 / Posted in: Information, Treatments & Research

The Framework demonstrates the commitment of UK governments to improve the lives of people with rare conditions, and address key challenges, over the next five years.

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DBC Survey: Your Views on Increasing Legacy Benefits by £20 a Week

08 January 2021 / Posted in: Information, Support

In March, in response to Covid-19, the Government increased the standard rate of Universal Credit and working tax credits by £20 a week. The Government, however, has not increased ‘legacy benefits’ in the same way. The DBC is calling for urgent action to make sure the 2 million disabled people and others on legacy benefits are not left behind. Share your views on this in their survey, by 18th January.

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Information Statement about how Access to Nusinersen Treatment is Affected by COVID-19

08 January 2021 / Posted in: Treatments & Research

In April 2020, advice from clinical experts and discussions with the Patient Groups informed a statement from NICE, NHS England and NHS Improvement. NICE have reviewed this and confirm that the flexibility and guidance in this statement remains in place.

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Children with SMA and Covid 19 - Spanish Study

06 January 2021 / Posted in: Treatments & Research

A study by the Spanish Society for Pediatric Neurology of a small number of children with SMA who caught COVID-19 concludes that, "The course of COVID-19 in children with neuromuscular disorders may not be as severe as expected…". The authors do though advise that their study, "has several limitations worth noting”.

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