SMA Newsroom

Today, on Rare Disease Day 2024, we are very excited to launch: "Care for adults living with SMA in Europe: a benchmarking report."

We are delighted to share with all of you the latest article about our 2023 Awareness Campaign: "I am Unique".

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. (...)"

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?