NICE Publishes Final Guidance Following Its Appraisal Of Nusinersen

24 July 2019 / Posted in: Treatments & Research

As there have been no appeals, access to the treatment will be as outlined in the Managed Access Agreement. We have not forgotten those who don't currently have access and will continue to work to change this.

Read full story

Registration for SMA Europe’s 2nd International Scientific & Clinical Congress on SMA Now Open

19 July 2019 / Posted in: Treatments & Research

The conference will be held at Génocentre in Evry, south of Paris between 5th & 7th February 2020 and is open for healthcare professionals and researchers in SMA to attend. The congress will feature a series of talks and workshops covering key scientific and clinical research fields in SMA.

Read full story

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.

Read full story

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.

Read full story

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”.

Read full story

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.

Read full story

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.

Read full story

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.

Read full story

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.

Read full story

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.

Read full story