Five years ago, the Rett Syndrome Communication Guidelines were published to provide a much-needed foundation of consistent, evidence-based best practices for supporting communication in individuals with Rett syndrome. Funded by an IRSF HeART grant, the project drew on a comprehensive review of existing research as well as global surveys of the Rett community developed by an international core work group.*
What resulted was a set of best practices that have been translated into seven different languages, distributed in print, and downloaded digitally by families and professionals around the globe. But the impact has extended far beyond the pages of the publication.
The Hive: A Community Takes Shape
The guidelines also sparked the creation of an IRSF Communication Guidelines CE certification as well as The Hive, an online professional development network for individuals who work with Rett patients.
Within The Hive, speech-language pathologists (SLPs), occupational therapists, physical therapists, and educational support staff come together to exchange ideas, share client stories, discuss research, and problem-solve as a collective.
SLP Andrea Etkie, PhD, who serves as a moderator for The Hive, applauds its ability to connect members of the Rett community:
“The Hive is a vibrant, dynamic forum where a diverse group of professionals come together around a shared purpose: improving the lives of individuals with Rett syndrome. It’s such a lively and compassionate space that likely wouldn’t exist without the establishment of the Communication Guidelines.”
As one member, Mollie S, shared after participating in a monthly live chat:
“It was very helpful, encouraging to share a little bit about the young girl that I currently care for with Rett syndrome.”
Her words capture the essence of The Hive: a space where professionals learn from one another and carry those insights directly into the lives of the individuals they serve.
Educating the Next Generation
Another powerful outcome of the Communication Guidelines has been its role in shaping future professionals. Over the last five years, 17 graduate programs across the United States have woven the guidelines into their curriculums. Through classroom discussions, conference presentations, and guest lectures, hundreds of graduate SLP students have been introduced to Rett syndrome and the guidelines before even stepping into the field.
For Etkie, that awareness is key. As a practicing SLP within the Florida public school system, Etkie had not heard of Rett syndrome prior to having a Rett patient added to her caseload. She wants the next generation to be exposed to Rett much earlier than she was, and the guidelines are making it happen.
At both national and state-level conferences, the guidelines have sparked meaningful conversations about how to apply these best practices in real-world settings—whether in schools, clinics, or homes. This early exposure equips emerging clinicians not just with tools for effective intervention, but also with the empathy and insight needed to support families navigating Rett syndrome.
Five Years Later, and Beyond
Today, the Rett Syndrome Communication Guidelines (available online here) remain a trusted resource and the foundation of a professional community that continues to grow. Through The Hive and ongoing educational initiatives, the ripple effect of the guidelines ensures that individuals with Rett syndrome are met with care that is collaborative, evidence-based, and compassionate.
Five years on, the impact of the guidelines is still unfolding, one conversation, one classroom, and one family at a time.
For more information about the IRSF Communication Guidelines CE certification, please click here.
*Coordinated by the Rett Expertise Centre Netherlands-GKC