NCB Survey: Experiences Of Using SEND Information, Advice and Support Services

18 July 2019 / Posted in: Information, Support

The National Children’s Bureau are carrying out a survey about people’s experience of using SEND information, advice and support services. Your answers to the questions will help the Government understand how good the services are.

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Cardiff Airport Invites Passengers To Join PRM & Disability Forum

11 July 2019 / Posted in: Information

On 4th September, Cardiff Airport is holding a meeting to explore ideas, and to agree the scope for their proposed Passengers with Reduced Mobility (PRM) and Disability Forum. Members of the public and third sector organisations are invited to attend.

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Contact's Resources For A Stress-Free Summer

11 July 2019 / Posted in: Information, Support

The summer holidays are very nearly upon us and Contact for Families with Disabled Children have put together their top tips for making summer as stress-free and fun as possible – this includes a link to their guide “Holidays, Play and Leisure”.

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Response from NICE to the SMA Community re: NICE's Communications About Access to Nusinersen

10 July 2019 / Posted in: Treatments & Research

We have received this reply in response to the letter sent by SMA UK, MDUK and TreatSMA on 14th June 2019.

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NICE / NHS England announce changes to the nusinersen Managed Access Agreement

03 July 2019 / Posted in: Treatments & Research

The MAA for nusinersen (Spinraza) will now include paediatric patients who have recently (in the previous 12 months) lost the ability to walk independently. It also commits to considering any significant evidence being made available by Biogen in relation to all with SMA Type 3 who are non-ambulant, that may impact on the eligibility criteria of the MAA. These are just two changes following many confidential discussions which we have been unable to report on until now.

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Scottish Government Updates On Access To Nusinersen For Those With SMA Types 2 And 3

02 July 2019 / Posted in: Treatments & Research

Following recent communication from the Scottish Government, the Scottish Medicines Consortium webpage for nusinersen has been updated to advise that, as well as being available for those with SMA Type 1, from July 2019 nusinersen can be prescribed for those with SMA Types 2 and 3.

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Survey on Accessible Transport and Parking

01 July 2019 / Posted in: Information, Support

Business Disability Forum has launched this survey seeking the views of disabled people or those who have a long-term health condition, on using public transport and accessible parking, in the UK. Survey closes 8am on Wednesday 10th July.

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Sign Open Letter Calling On NHS England To Keep Its Promise To Protect The Children’s Hospice Grant

01 July 2019 / Posted in: Information, Support

Together for Short Lives has found that NHS and local council cuts are hitting lifeline care for seriously ill children. Gabriella Walker, a bereaved parent, is inviting children’s palliative care services, families of children with life-limiting conditions, and the general public to add their name to her letter to the Health and Social Care Secretary, calling for urgent action.

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Guide to the 2017 International Standards Of Care For SMA Launched Today

26 June 2019 / Posted in: Treatments & Research

The SoC is now available via the TREAT-NMD website. It describes what assessments and interventions families and adults should expect to find in any neuromuscular centre anywhere.

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Your Views on the Possible Provision of Zolgensma by NHS England, for Infants who have SMA Type 1

25 June 2019 / Posted in: Treatments & Research

Patient groups would like to find out what you think about this new treatment so that we can include your views in our submissions to the National Institute for Health and Care Excellence (NICE). Our survey closes on 21st July 2019.

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