Access to Zolgensma Submission Sent to the Scottish Medicines Consortium

09 December 2020 / Posted in: Treatments & Research

SMA UK and MDUK have made a joint submission, which you can read here, in which we strongly support access to this treatment. We expect the Committee to meet and publish their decision in the first quarter of 2021.

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Action to Address Lack of Access to the Risdiplam Early Access to Medicines Scheme for Adults in the East of England

04 December 2020 / Posted in: Treatments & Research

We are working through various routes to urge the Trust to change its position and, in the meantime, to address how people living in this area of the country who meet the EAMS eligibility criteria can get access to the risdiplam EAMS.

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Access to Covid 19 Vaccines Update

04 December 2020 / Posted in: Information, Support

Patient organisations have been working together to make sure our communities are included as quickly as possible in the future roll-out of the Covid vaccines. MDUK’s latest summary of where we are now, and a BBC Radio 5 Live clip discussing children and families, will help keep you up as up-to-date as possible.

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DCP - Back to School Poll Results Launch

01 December 2020 / Posted in: Information, Support

The Disabled Children's Partnership's research has found that 24% disabled children are not in school full-time and the education and health support, which is so crucial to learning, is not back to pre-pandemic levels.

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International Day of Persons with Disabilities

30 November 2020 / Posted in: Information

Tuesday 3rd December is the UN International Day of Persons with Disabilities (IDPD). Introduced in 1992, the IDPD aims to promote the rights and well-being of disabled people across society.

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If you're NOT currently on The Motability Scheme, the TRL would like to hear your views

27 November 2020 / Posted in: Information, Support

The Transport Research Laboratory are looking for people who have a disability, impairment or long-term health condition (or their carers, parents or appointees) and have a mobility allowance, to complete a survey about their views of the Motability Scheme and their wider mobility needs. Survey closes 7th December with the chance to win some Amazon vouchers.

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Carers Trust Social Care Survey 2020 - The Results

27 November 2020 / Posted in: Information, Support

Earlier this year, Carers Trust asked unpaid adult carers looking after someone, what they thought about the social care system, how the social care system impacts on them and what they want from a reformed social care system. They've now published the results which will help with their lobbying and campaigning work to improve support for unpaid carers across the UK.

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New Articles on Aspects of Clinical Care Research from our Correspondent

25 November 2020 / Posted in: Treatments & Research

Dr. Alex Murphy has put together these two articles - the first around exercise and SMA, the second discussing a study assessing the use of a physical function assessment tool.

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SMA UK Sends Evidence to Biogen for the NICE Review Considering Whether People who have SMA Type 3 and Unable to Walk can Benefit from Nusinersen Treatment

23 November 2020 / Posted in: Treatments & Research

We are very aware that this review will be focusing on clinical evidence from Biogen and the clinical community. However, we consider it is also vital that NICE hears the wider ranging evidence we have gathered.

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SMA UK Joins Other Groups Advocating for Early Access to COVID-19 Vaccines for our Communities

23 November 2020 / Posted in: Information, Support

Though, clearly, frontline staff, those in care homes and those who are older need priority access, we are very concerned that many clinically vulnerable children and adults and their families / carers / personal assistants, don’t feature as priority groups under the current early access proposals. We've written to The Joint Committee on Vaccination and Immunisation.

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