Latest News: Research
13 April 2017 / Posted in: Research
Biogen have set out their reasoning for this decision. We understand many families will be bitterly disappointed by this news.
06 April 2017 / Posted in: Research
Today, seventy clinicians, physiotherapists, study coordinators, industry and advocacy groups' representatives, including SMA Support UK, outline their position and recommendations to NICE, NHS England's Care and Clinical Reference Groups (CRGs), NHS Trusts and Biogen.
05 April 2017 / Posted in: Research
AveXis has released results from the completed Phase I trial of their gene therapy drug for SMA, AVXS-101.
29 March 2017 / Posted in: Research
SMA Support UK will today join Genetic Alliance UK and MDUK at the All Party Parliamentary Group for Muscular Dystrophy which NICE will also attend.
28 March 2017 / Posted in: Research
A workshop is taking place in London in January for people with a lived experience of genetic conditions as part of a new research project.
17 March 2017 / Posted in: Research
Our current focus is on trying to get NHS England to agree a potential commissioning framework to support the provision of this new and first treatment for SMA. Find out how you can support these efforts by contacting your local MP with this template letter.
08 March 2017 / Posted in: Research
New pre-clinical research has shown the exciting potential of using viruses to treat Spinal Muscular Atrophy with Respiratory Distress (SMARD), a recessive motor neuron disease similar to SMA.
07 March 2017 / Posted in: Research
In response to our request for an update, Biogen has released this statement today.
02 March 2017 / Posted in: Research
The charities shared a stall at Royal Holloway’s annual Rare Disease Day event on February 24th.
09 February 2017 / Posted in: Research
AveXis has announced details of a European pivotal trial of their gene therapy drug for SMA, AVXS-101.