Urgent request: short survey to assist with ongoing negotiations with NICE re access to nusinersen
17 December 2018
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. This survey may be completed by the person with SMA, partners, parents / carers, or together. However, please complete it only once for each person currently living with SMA in the UK. If there is more than one person in your family who has SMA, you may want to complete a survey for each person.
Some of the questions may well be very similar to ones you have answered in previous surveys, but please do take time to reply again as the responses you give here will add further insight and detail to information previously collected.
If you have any difficulties accessing this survey, please contact Daniel@wickenstones.com
Closing date for the survey is 9am on Monday 7th January 2019. Thank you.