SMA Newsroom

AdvocacyOdySMAMay 21, 2024

New Real-life Stories on OdySMA!

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!

OdySMAJun 8, 2023

Publication of OdySMA abstract in the Orphanet Journal of Rare Diseases

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, 2nd June.

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.

 

OdySMASep 20, 2022

Laura Gumbert, our OdySMA Project Manager, selected as a recipient of the ISPOR Patient Representative Conference Grant.

Laura Gumbert, our OdySMA Project Manager, has been selected as a recipient of the ISPOR Patient Representative Conference Grant for Virtual ISPOR Europe 2022.