About
What is OdySMA?
OdySMA’s name is inspired by Homer’s epic Odyssey adventure.
It has been designed, as one of SMA Europe’s initiatives, to help navigate through data and information on access to SMA medicines, care and health care system performances.
It does so by centralising and mapping data, by providing tools and by centralising knowledge, which we need to successfully advocate for our one central goal:
No one is left behind
SMA Europe aims to improve access to diagnosis, optimal treatment and care for all individuals in Europe living with spinal muscular atrophy.
However, access to healthcare differs substantially across the spectrum of all individuals living with SMA as well as across European countries. With its initiative “OdySMA – a quest to access” SMA Europe ‘s goals are to identify hurdles to access in order to initiate advocacy and policy shaping initiatives to overcome them. With OdySMA:
1) data regarding access to diagnosis, medicines and care in all SMA Europe member countries is collected in one place and mapped in a comparative way in an online Access Atlas to provide an overview over the current access situation,
2) differences in access across countries and the spectrum of individuals living with SMA are visualised to identify gaps and to work towards solutions,
3) through dedicated trainings, patient advocates gain requires skills to build successful advocacy strategies in order to improve access to medicines and care.
Access Atlas
Visualising the Data
Data collection and data visualisation are key for impactful advocacy for access to SMA medicines and care.
Only with evidence-based advocacy can we work towards change and bring unrestricted access to optimal medicine, care and diagnosis to each individual living with SMA in Europe.
OdySMA follows a participatory approach to collect data. With its Access Atlas it provides interactive visualisations of country specific information and country-by-country comparisons on key data relevant to access to SMA medicines and care.
The data on the access atlas is updated on a regular basis thanks to the contribution of SMA Europe’s members and supporters. Should you identify inaccuracies or omissions, please contact (laura.gumbert@sma-europe.eu) us and let us know. We count on you!
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. OdySMA is a participatory tool. Should you identify inaccuracies or omissions, please contact laura.gumber@sma-europe.eu us and let us know. We count on you!
No one is left behind - why?
"No one is left behind” is a key driver to SMA Europe’s advocacy work. This means unrestricted access to the optimal medicine, treatment, care and diagnostics regardless of location, age, mobility or SMA type to stop access inequalities.
Let us rise together today for change!
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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!