Your voice

say stabilisation of disease is a success

Real people, real data

Our European Patient Expectation Survey (EUPESMA) Series are designed to map the experiences and to ascertain the needs and wants of people living with SMA, to help SMA Europe advocate 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-2019

responses in 2019
no access to medicines
felt frustration, helplessness or unfairly treated

Demography and access

  • 56% had a scoliosis
  • contracture were common: 63% in knees, 40% in hips, 32% in elbows, 21% in jaws and almost 20% in wrists and shoulders
  • 69% had no breathing assistance / 19% of those who did had a tracheostomy

Snapshot of EUPESMA-2019

Participation by mobility levels and type

1474 people affected by SMA, with both unique and shared experiences, with all SMA types and mobility levels across 26 European countries  participated

We have featured a snapshot of the results on this page, please click the EUPESMA-2019 Patient Summary for a full overview of the project.


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