SMA Newsroom

Last Wednesday, 16 of October, Alice Larotonda and Laura Gumbert, on behalf of SMA Europe, presented OdySMA Real-Life Stories. 

While stabilising treatment for SMA is available, European-wide access is not. 

Meet Jana, Julia and Nataliia to understand how access to treatment and care, can impact the lives of people living with SMA!

We are delighted to see that the OdySMA abstract submitted after the European Conference on Rare Diseases (ECRD) 2022, was recently published in the Orphanet Journal of Rare Diseases on Friday, 2^nd June.

Today we want to celebrate with you the official launch of our OdySMA project. OdySMA is an initiative that aims at one and only goal: that no one is left behind in the access to treatment journey.

OdySMA is a dynamic tool that we are using to create an SMA atlas that visualises systematically collected data to illustrate access pathways. The goal is to reveal the 'quest to access' of people living with SMA by mapping, visualising and centralising knowledge and data around access issues.