We are pleased to share the latest community update from Roche with several topics that are relevant to our SMA Community.
How does caring for a child with SMA impact the lives of their parents? What influences the parents’ well-being, both in a positive and negative way?
Have you ever wondered how the accessibility of your environment, your treatment status, or your sleep quality impact the way you are feeling? Why are some days easier than others? Why are some moments of the day or week more challenging?
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.