From April 2020: Free Hospital Parking for Some Patients, Staff and Carers
10 January 2020 / Posted in: Information, Support
Disabled people, frequent outpatient attenders, parents of sick children staying overnight and staff working night shifts, will not have to pay for NHS car parking from April 2020.
NICE Committee Meeting to Review the Possibility of Recommending that Access to the Treatment Zolgensma is Funded by the NHS Delayed
06 January 2020 / Posted in: Treatments & Research
NICE advised on 23rd Dec that the first committee discussion scheduled to take place on Thursday 26 March will not now take place. The evaluation will be rescheduled into the work programme and the updated timelines will be communicated, once known.
SMA Europe Sets Out its Concerns about the AVXS-101 Zolgensma Global Compassionate Use Programme Announced in December 2019
06 January 2020 / Posted in: Treatments & Research
As members of SMA Europe, we endorse this statement made by SMA Europe on 26th December. It outlines the many concerns there are about this programme.
Petition On Social Care Reform
20 December 2019 / Posted in: Information, Support
The Neurological Alliance has launched a joint campaign, with Change.org and Epilepsy Action, to raise the profile of people with neurological conditions in the conversation around social care. Find out more and sign the petition.
Limited Global Access to Zolgensma announced by Avexis
20 December 2019 / Posted in: Treatments & Research
Clinicians and SMA patient groups in SMA Europe have welcomed the news that Avexis will be launching a global compassionate use programme in January 2020 for eligible children under 2 years of age, but have concerns about how it will operate.
Clinicians & Patient Groups Requesting AveXis Clarification About Potential Limited Global Access to Zolgensma
19 December 2019 / Posted in: Treatments & Research
We're aware that complex and sensitive information regarding potential but very limited global access to the gene therapy treatment Zolgensma has been shared online. Clinicians and patient groups have expressed their concerns to the drug company AveXis requesting, as a matter of urgency, public clarification of the position.
New SMA Voices: Gary Shares His Experiences
18 December 2019 / Posted in: Information, Support
In this video, Gary looks back at his childhood and forward to present day, and shares his experiences of what it’s like to live with Spinal Muscular Atrophy.
Information and Support over the Christmas Break
11 December 2019 / Posted in: Information, Support
Our office is closed from 1pm on Friday 20th December 2019. We re-open on Thursday 2nd January 2020 at 9.00am. Here are links to where you can access support and information about SMA during this time.
Together for Short Lives Launches Youth-Led Creative Artwork Project
10 December 2019 / Posted in: Information, Support
Called 'This Is Me', the project provides an opportunity for young people with life-limiting conditions in the UK to express themselves through the creative arts. Submissions deadline is 20th January 2020.
Support the #NeuroPledge2019
03 December 2019 / Posted in: Information, Support
The Neurological Alliance are asking parliamentary candidates to take the #NeuroPledge2019. It commits them to campaigning for improvements for people with neurological conditions, if they become an MP. Find out how you can get involved and write to your prospective MP.
