SMA Newsroom

Dec 22, 2021

Help us advocate for our common needs!

In order to advocate for better access to treatment and care, we need to gain an in depth understanding of the experience people living with SMA have, with regards nutrition, physiotherapy and treatment. The opinion of people living with SMA is essential to achieve this goal.

The SMA community still faces significant unmet therapeutic and care needs, even after the approval of SMA therapies. The current survey aims to capture these needs to facilitate access to therapeutic and care options for all people who live with SMA.


Please comply with the following points. This is very important as it will allow us to ensure the validity of the answers collected, so that the results can be published in an accredited scientific journal and used as an effective advocacy tool!

  • Please fill in the questionnaire only once. The questionnaire will be sent to individuals via email, published on our website and shared on our social media channels. This is very important to ensure the validity of the collected responses.
  • The survey is extensive and is likely to take 30 – 45 minutes of your time. Please fill in and submit the whole questionnaire. Only completed questionnaires can be considered for evaluation.
  • The survey has responsive design. However, we recommend you work on larger screens and not on mobiles, because the survey includes tables which are challenging to read.

Survey links (20 languages)

NB: in the top right-hand corner, there is a drop-down menu showing the different languages the survey is available in.

More information on our EUPESMA Series can be found here!