SMA Newsroom

Feb 1, 2023

OdySMA goes live!

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.

 

Laura Gumbert, Project Manager of OdySMA states:

“I am very grateful to be part of this unique project. The launch of the OdySMA project makes the intensive work of many months visible and gives all people in Europe living with SMA, as well as their families and patient advocacy groups, a powerful tool to facilitate policy work and to accelerate access to healthcare provision.

But there's more to it than that: This platform shows also at a glance all the already realized achievements of our strong community. I would like to thank everyone who has contributed to this huge project, our community, our partners from the industry, and our IT partner. Without you, this would not have been possible! Today’s step is an important milestone, and I am looking forward to now maintaining the platform but also expanding it so we have a helpful, sustainable advocacy tool for our community.”

All together. One goal.