How to use OdySMA for Patient Advocacy

Together working towards Change

The aim behind the collected and visualised data, tools and centralised knowledge is to support patient advocates to identify, understand and overcome variation in access to medicines and care in Europe. 

Only together, as an active and engaged community, can we elevate the voice of SMA patients and their loved ones so that ultimately our concerns are heard by decision-makers to evoke change. Together, we need to generate evidence so that we can bang the drum!“

Nicole Gusset, President & CEO, SMA Europe

How to use data visualisation for your advocacy

Data collection and comparison at European level are paramount for successful advocacy for access to medicines and care. Data provides evidence of unmet needs, highlights disparities, informs policy decisions, builds credibility, demonstrates economic impact, and facilitates cross-border collaboration. There are several ways to use OdySMA data in your advocacy work, including: 

Compare and reveal best practices
By highlighting differences in diagnostics and treatment availability, you can advocate for policies that address inequalities and ensure consistent access to care across borders. Comparative analysis can also reveal best practices and provide evidence for policy improvements.

Showcase economic impacts
Data on healthcare costs at both individual and societal levels can be powerful in influencing policymakers and healthcare stakeholders.

Further assess unmet needs
OdySMA data serve as a foundation to conduct additional data collection studies on the specific needs and challenges faced by the SMA community.

Build partnerships
Collaborate with healthcare professionals, researchers, and industry stakeholders using data as a common ground. Data-driven discussions foster partnerships that can lead to more effective advocacy strategies.

Engage with the media
Work with media outlets to share impactful stories backed by data. Personal narratives combined with statistics create a compelling narrative that resonates with the public and policymakers.

Seek funding
Use data to advocate for increased research funding. Demonstrating gaps in knowledge, treatment options, or areas with high unmet needs can attract funding for critical research projects.

Stay updated!

Newsletter sign up

Keep up-to-date with the OdySMA project. Sign up to receive our digital newsletter

An SMA Europe initiative, supported by:

BiogenNovartisRocheScholar Rock

OdySMA is a participatory advocacy tool. Therefore SMA Europe cannot warrant the completeness, reliability, or absolute accuracy of the data shared on OdySMA, as there may be changes that our members and supporters do not immediately inform us of. Should you identify inaccuracies or omissions, please contact us and let us know. We count on you!