OdySMA - a quest to access

OdySMA is an initiative to reveal the 'quest to access' of people living with SMA; by mapping, visualising and centralising knowledge and data around access issues. 

OdySMA has one central message:

No one is left behind!

Check out our OdySMA websiteCheck out our OdySMA communications toolkit

"Insufficient access to the approved
therapy resulted in reports of strong
negative feelings, which included:
anger, frustration, helplessness,
traumatization, unfair treatment,
and devastation."



Why do we need OdySMA?

As access to medicines and care differs substantially across multiple patient subgroups at national level, as well as across European countries, SMA Europe members have increasingly requested support:

  • to better understand the status of access to medicines, treatment, and care across Europe.
  • to shed light on access hurdles and identify advocacy and policy shaping initiatives to overcome them
  • to ensure access continuity into the future, where access is already granted

Evidence-based advocacy is the foundation for bringing patient-relevant advances to our SMA community. We need to understand our data and the processes within systems. By knowing and comparing the processes across Europe, we can identify gaps on national levels and we can shape our advocacy work.

Only then can we find ways to make our case.


What will OdySMA bring?

SMA Europe strives to set up a comparative, systematic and continuous access data collection, including its translation into actionable steps, in order to address access challenges and ensure that no one is left behind.

The OdySMA initiative will:

  • bring together individuals from the SMA community who care about access to medicines and care in Europe
  • map, visualise and centralise knowledge and data across the landscape of medicines and care in different European countries
  • provide the comparative access data across countries and patient subgroups
  • identify gaps and best practices in access to medicines and care
  • make recommendations for solutions
  • train patient advocates to use this evidence for their advocacy work
  • support in building successful advocacy strategies to improve access to SMA medicines and care in Europe
  • inform evidence-generation priorities 


OdySMA sponsors


Novartis Gene Therapies

Scholar Rock