Our 2023 European Patient Experience Survey (EUPESMA) on SMA and Clinical Trials is now live!

What would YOU like to see in future clinical trials for SMA?

This year’s EUPESMA survey focuses on SMA and clinical trials. Clinical trials are a vital part of drug development, but participating in them can be a delicate decision and challenging experience.   

We want to advocate for clinical trials that are relevant, worthy, and tailored to the needs of people living with SMA! 

Whether you have already or have never participated in clinical trials before, let us hear your thoughts. 


The survey is open to people living with SMA (16 years old or older) and their parents.

It is available in English, Czech, Dutch, French, German, Greek, Italian, Polish, Romanian, Russian, Serbian, Spanish, Swedish, and Ukrainian.

Click here to participate!

Your voice

say stabilisation of disease is a success

Real people, real data

Our European Patient Experience Survey (EUPESMA) Series are designed to map the experiences and expectations and to ascertain the needs and wants of people living with SMA. With this evidence, SMA Europe advocates for equal access to optimal treatment and care in Europe.

“Systematically collecting the patients’

perspectives across Europe is a powerful tool

to advocate for universal needs.”


Key data EUPESMA-2021

responses in 2021
No advice from a nutritionist or dietician
Average hours of physiotherapy per week

Demography and access


  • Hours of physiotherapy per week ranged from 0 to 50, with an average of 4 hours per week.  

  • Our community considers 7 hours per week to be the ideal amount of physiotherapy.  

  • However, costs (28%), lack of qualified therapists (28%), lack of time (26%) or motivation (10%) prevented from achieving this standard. 



  • 65% experience nutrition problems and 20% are on a special diet.  

  • Of 12% having a feeding tube, 69% exclusively feed through the feeding tube. 

  • 61% do not receive advice from a nutritionist or dietician, 20% did so in the past, and only 18% receive advice presently. 



65% received treatment, 9.8% would start soon, 18.1% did not receive treatment, and 2.3% had received treatment, but stopped.  

Snapshot of EUPESMA-2021

Participation by mobility status


The question

Why do we need Pan-European patient surveys?

  • Access to SMA treatment and care is fragmented across Europe
  • Medicines access across different subgroups of people living with SMA is unequal.
  • A common Pan European voice is impactful to inform stakeholders about our experiences and also needs, and will eventually help to facilitate change.
  • Our previous surveys and especially also EUPESMA-2019 survey showed unequal treatment access across different age groups, SMA types and mobility levels, with the trends between access and either type or mobility severity level lacking in alignment. Based on these outcomes, SMA Europe shaped new projects such as OdySMA and DaLy. 

An SMA Europe series

Our SMA patient expectations surveys

Our 1st survey

Our first survey, published in 2017, sought to obtain a view on the clinical state of European people living with Type II and Type III SMA, the impact of this situation on their quality of life and their expectations regarding clinical development.

Our EUPESMA-2019

Our second survey, published in 2021, sought to understand the treatment expectations of people living with SMA after the approval of the first therapy, the realities of daily living and access to clinical trials and therapy, and how this varied according to parameters such as age and disease severity.

Our publications