SMA Newsroom

Today we are very happy to share with you the interview with our CEO, Nicole Gusset, published by Rare Revolution Magazine.

Nicole shares her vision of SMA Europe and speaks about different initiatives led by our organisation:

"(...) Initially, we were all united in the same goal—all fighting for the same unmet need—lack of treatments. Now we have medicines, but these are not universally available across Europe (or indeed globally). We need to be careful in our work that we stay united. (...)"

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?

At the 270th ENMC International Workshop, which took place from 10 - 12th of March 2023 in the Netherlands, participants agreed to determine a standard operating procedure for SMN2 gene copy number determination and a specific workflow for diagnosis and management of SMA patients identified in neonatal screening as well as to engage collaborative efforts for the creation of a European network to address discrepancies among expert centres. 

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?