Rett Syndrome Communication Guidelines: A handbook for therapists, educators and families

Gillian S. Townend*, Theresa E. Bartolotta, Anna Urbanowicz, Helena Wandin, Leopold M.G. Curfs

*Corresponding author for this work

Research output: Book/ReportBookProfessional

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What are the Guidelines?
The guidelines are designed for parents, carers, therapists and educators. They help by setting a baseline of good practice in developing the communication skills of people with Rett syndrome. They are a starting point for assessment, intervention and long-term management. From this detailed baseline, local and personal practice can be built.

How did we develop them?
The project called on practice and experience of people around the world, coordinated by a small group of international experts. They are consensus-based guidelines, based on available evidence gathered through systematic literature review, real-life experience and expert opinion. In total, 650 people from 43 countries participated in the project.

The project was coordinated by the Rett Expertise Centre Netherlands-GKC and funded by a HeART Grant from

For questions relating to the guidelines, please contact Gill Townend:
Original languageEnglish
Number of pages116
ISBN (Electronic)978-94-6380-822-4
Publication statusPublished - 2020


  • Rett syndrome
  • Consensus-based guidelines
  • Augmentative and alternative communication (AAC)
  • Assessment
  • Intervention
  • Long term management of communication

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