SSF Guidelines
SSF Guidelines
Mar 21, 2025
fao.org
Today, history was made for one of the rarest diseases on Earth. My gene-targeted chemo was just approved off-label for Maffucci syndrome through what is basically a compassionate use. That means it’s technically experimental, and not part of a formal trial, but it’s my best shot at a future. There’s no roadmap for this. No guidelines. Just science, hope, and faith that maybe, just maybe, this treatment could change everything. 🤞 Science snapshot: • Maffucci syndrome is driven by mutations in t
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Today, history was made for one of the rarest diseases on Earth. My g…
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