SMA Newsroom

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.

From SMA Europe we are excited to announce the appointment of Nicole Gusset as our new CEO.

Nicole Gusset has extensive experience working alongside SMA Community. Nicole’s first-born daughter Victoria was diagnosed with SMA Type II in 2011. As a result of this, in 2012, Nicole founded the patient organisation SMA Schweiz. She has been appointed as the President of SMA Europe since 2021 and now, will be holding the position of CEO in SMA Europe.

From SMA Europe we would like to share that Biogen has announced a license and collaboration agreement with the US company, Alcyone Therapeutics, to evaluate further its investigational implantable device called ThecaFlex DRx™. 

ThecaFlex DRx offers an alternative means of nusinersen administration for people with SMA. 

The following text aims to clarify the current situation regarding Zolgensma global Managed Access Program after the changes announced by NGTx on the 9th of January 2023.