We are happy to share the news from Rett Expertise Centre Netherlands-GKC and Rettsyndrome.org about the release of the NEW Rett Syndrome Communication Guidelines: A handbook for therapists, educators and families.
The digital download is free and can be downloaded as many times as you need.
You can choose to download the complete handbook or individual sections of the handbook.
Click here to download your personal copy of the guidelines now:
https://cris.maastrichtuniversity.nl/en/publications/rett-syndrome-communication-guidelines-a-handbook-for-therapists-
Please feel free to pass the link to this page to other people.
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 were the guidelines developed?
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 Rettsyndrome.org.
The members of the project team were:
- Gillian S. Townend, Rett Expertise Centre Netherlands-GKC, Maastricht University Medical Center, Maastricht, The Netherlands.
- Theresa E. Bartolotta, Department of Speech-Language Pathology, School of Education, Monmouth University, NJ, USA.
- Anna Urbanowicz, Social and Global Studies Centre, School of Global, Urban and Social Studies, RMIT University, Melbourne, Australia.
- Helena Wandin, Swedish National Center for Rett Syndrome and Related Disorders, Frösön, Sweden, and Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
- Leopold M. G. Curfs, Rett Expertise Centre Netherlands-GKC, Maastricht University Medical Center, Maastricht, The Netherlands.
Translation of the guidelines
The guidelines are currently available in English. If you would like to translate the guidelines into another language, please contact Dr. Gill Townend (project coordinator): g.townend@maastrichtuniversity.nl