Tel: 01789 267520

Brief Report from the All Party Parliamentary Group that focused on nusinersen

21 July 2017 / Posted in: Research

Held on 18th July, this covered the current provision of nusinersen for infants with SMA Type 1 through the Expanded Access Programme (EAP) and what progress there has been towards the possibility of wider access.

Read full story

The One Show Making Film about the Issues Disabled People Face when using Public Transport

19 July 2017 / Posted in: Information & Support

They are looking for people to record short videos on their phones/cameras when they genuinely encounter a problem when using public transport.

Read full story

Join the Campaign!

19 July 2017 / Posted in: Information & Support

If you want to see a Changing Places toilet near you, setting up a local campaign group to gather support and lobby decision-makers in your area is an effective way of making that change happen.

Read full story

Our Survey: So What Did You Tell Us?

19 July 2017 / Posted in: Information & Support

Thank you to those of you who completed our survey and told us what you think of our current services and gave us your ideas about our future direction. Here are the results...

Read full story

Biogen announces how long they intend to keep open UK EAP for SMA Type 1

13 July 2017 / Posted in: Research

They state that this will be for ‘the remainder of the year in the UK’ and that they will ‘re-evaluate the progress of the reimbursement progress and the EAP towards the end of 2017’.

Read full story

PTC Therapeutics Provide Preliminary Clinical Data on RG7916

11 July 2017 / Posted in: Research

PTC Therapeutics presented an update on their splice-modifying drug, RG7916, at the 2017 Cure SMA Conference in Orlando, USA.

Read full story

Discussion about access to nusinersen

06 July 2017 / Posted in: Research

The All Party Parliamentary Group (APPG) for Muscular Dystrophy will discuss access to nusinersen on Tuesday 18th July in the Houses of Parliament. SMA Support UK and families will be there.

Read full story

Announcing the successful outcome of the 9th SMA Europe Research call

06 July 2017 / Posted in: Research

Based on the recommendations received by its Scientific Advisory Board, SMA Europe have awarded a total of €357,800 towards 3 cutting-edge SMA research projects.

Read full story

Update from NHS England’s June 6th meeting about the SMA Type 1 EAP

05 July 2017 / Posted in: Research

Lead clinicians and centre service managers were called together. SMA Support UK was also present. Due to the election ‘purdah’ and the NHSE communications approval process no one at the meeting has been able to discuss what went on until now with the release of the meeting notes.

Read full story

Waiting for a Place on the UK Nusinersen Expanded Access Programme for SMA Type 1?

04 July 2017 / Posted in: Research

Please help progress access to the programme by letting SMA Support UK know about your child and where you live so that we can discuss the national picture with clinicians and NHS funding bodies.

Read full story