Online Survey for Paediatric Physios re SMA
18 January 2019 / Posted in: Information, Support
This international research will give a better understanding of how physical therapy services are provided to those with SMA and will help give further information about issues that may be relevant to improving the education around this. Closes 1st March.
Get Out There for SMA in 2019
07 January 2019 / Posted in: Help Us
If you are thinking of taking part in a sponsored event for SMA we have updated our events pages with 2019 dates and inspiration!
Trailblazers Body Image Survey
07 January 2019 / Posted in: Information, Support
Trailblazers want to hear from young, disabled people about how they feel about their 'body image'. By this, they mean how individuals feel about the way they look and how this affects confidence, self-esteem and mental wellbeing.
Coffee and Cake Day
04 January 2019 / Posted in: Help Us
Beat the Winter Blues by getting friends and family together for some delicious bakes
CQC Survey: People's Experiences of Care
04 January 2019 / Posted in: Information
The Care Quality Commission is running a survey to find out people's different experiences of care. By sharing your experiences, you’ll help them to improve the overall quality of care in England.
Urgent request: short survey to assist with ongoing negotiations with NICE re access to nusinersen
17 December 2018 / Posted in: Treatments & Research
We are facilitating finding out more about the financial and work-related impact of living with SMA Type 1, 2, 3 or 4, for unpaid carers in the UK. This survey may be completed by the person with SMA, partners, parents / carers, or together. Closing date for the survey is 9am on Monday 7th January 2019.
Roche's Risdiplam Granted PRIME Designation by EMA
17 December 2018 / Posted in: Treatments & Research
Roche have issued a media release confirming PRIME designation has been granted by the European Medicines Agency (EMA) for risdiplam (RG7916) for the treatment of SMA.
Information and Support over Christmas / New Year
16 December 2018 / Posted in:
We are sorry we are unable to stay open for phone or email enquiries during the Christmas period. Please find details here of other organisations that will be available for you during this time.
Response from Biogen to Charities' Letter re Bridging Solution
14 December 2018 / Posted in: Treatments & Research
We have received a written response from Biogen to the joint charities' letter we sent on 29th November about the urgent need to set up a bridging solution for access to nusinersen.
Response from NICE to Charities' Two Joint Letters
14 December 2018 / Posted in: Treatments & Research
NICE have sent a letter back in response to the joint charities' two letters we sent: firstly about the urgent need to set up a bridging solution for access to nusinersen; secondly urging them to ensure nusinersen has priority place at the next meeting.
