New publication: 20 Years of SMA Europe: From firefighting to future-building by Rare Revolution Magazine.
We are delighted to invite you to read the latest 20 Years of SMA Europe: From firefighting to future-building by Rare Revolution Magazine.
Rare Revolution Magazine has featured A seat, a voice, a vote: reimagining the role of SMA patient advocates in research and care written by Nicola Miller, RARE Revolution Magazine, interviewed with Nicole Gusset, CEO, SMA Europe and Federica Fontana, research and medical manager SMA Europe
What began as a small network of volunteers funding research from kitchen tables has grown into a strategic organisation bringing together patients, researchers, clinicians, and industry to drive progress in SMA.
Today, SMA Europe not only supports research and advocacy, but also convenes the community through initiatives such as the 5th International Scientific Congress on SMA in Budapest, which welcomed more than 1,000 participants, and through work that continues to address access, care, and the future of treatment.
The article also makes one thing clear: while progress has been extraordinary, SMA is not yet cured and the next chapter must focus on equity, innovation, and long-term impact for all people living with SMA.
Huge thanks to Rare Revolution Magazine. Together, #WeAreOne.