06 December 2017 / Posted in: Research
Catalyst Pharmaceuticals have announced that they are to investigate the potential of a drug called Firdapse as a treatment for people with SMA Type 3.
Research survey seeking views on sport participation for non-active disabled people following the London 2012 Paralympics
06 December 2017 / Posted in: Information & Support
If you would like to voice your opinion and assist a third year PhD student, please read more.
30 November 2017 / Posted in: Research
We have now received a further update and clarification that the Scottish Medicines Consortium will be assessing nusinersen for "pre-symptomatic infantile-onset and later-onset 5q SMA, but not for before birth or Adult Onset SMA".
29 November 2017 / Posted in: Information & Support
A petition has been set up calling for the 6 main supermarket chains to commit to providing Changing Places toilets in their stores within the next 18 months. Please consider signing this petition.
22 November 2017 / Posted in: Our Community
ITV1's garden makeover show 'Love Your Garden with Alan Titchmarsh' is back (along with sister show, 'Love Your Home and Garden'). Apply or nominate someone who could benefit.
22 November 2017 / Posted in: Research
Genetic Alliance voices the Rare Disease Community's concerns about the proposed changes to the NICE Technology Appraisal Programme.
22 November 2017 / Posted in: Information & Support
Contact's research has shown that there is still a lot of confusion about who is entitled to what. Here, they bust some of the myths surrounding the Disability Living Allowance (DLA).
17 November 2017 / Posted in: Research
Biogen’s SMA Community Update to SMA Europe covers recent trial results as well as what’s happening in terms of access in Europe and worldwide.
16 November 2017 / Posted in: Information & Support
Do you have a rare or undiagnosed condition? OR are you a parent or carer of someone with a rare or undiagnosed condition? Complete Rare Disease UK's survey to share your thoughts and experiences.
15 November 2017 / Posted in: Research
The 22nd International Annual Congress of the World Muscle Society (WMS) was held October 3rd-7th 2017 in Saint Malo, France. While SMA Support UK did not attend, Biogen have uploaded three posters to their repository that were presented at the meeting.