IRSF Blog

Five years after its release, the Rett Syndrome Communication Guidelines continue to inspire a global movement in care and collaboration. What began as a set of best practices has grown into The Hive—a vibrant professional network—and has shaped graduate programs nationwide, ensuring individuals with Rett syndrome receive care that’s informed, compassionate, and connected.

New research is breaking down outdated assumptions and bringing male experiences into full view.

Summer may bring a shift in routine, but with the right support, it can also be a time for growth, connection, and a little more breathing room.

As rare disease advocates gathered for Rare Disease Week 2025, they reinforced a powerful truth: when we come together, our voices are impossible to ignore.

Inconceivable. That’s the word that photographer Dave Clements uses to describe the emotion swelling in his stomach when thinking back to March 9, 2003.