Rett Syndrome Communication Guidelines

As a registered member of the Rett UK Communication Professionals Network you will receive a  FREE printed copy of the Rett Syndrome Communication Guidelines (UK & Ireland edition). 

You can also download the digital version FREE of charge (subject to the Terms of Use, see below). This can be downloaded as many times as you need. You can choose to download the complete Handbook or individual sections of the Handbook. 

See below to download your copy NOW.

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. 

Who are the team behind development of the Guidelines?

The international project team was coordinated by The Rett Expertise Centre Netherlands-GKC and funded by a HeART Grant from the International Rett Syndrome Foundation (also known as The members of the project team were:

- Gillian S. Townend, Ph.D., SLT & Researcher at the Rett Expertise Centre Netherlands-GKC, Maastricht University Medical Center, The Netherlands, and Project Lead, Communication & Education Team, Rett UK. 

- Theresa E. Bartolotta, Ph.D., SLP & Adjunct Professor at the Department of Speech-Language Pathology, Monmouth University, USA.

- Anna Urbanowicz, Ph.D., OT & VC Postdoctoral Fellow at the Social and Global Studies Centre, RMIT University, Australia.

- Helena Wandin, Ph.D., SLT at the Swedish National Center for Rett Syndrome and Related Disorders, Frösön, Sweden.

- Leopold M.G. Curfs, Professor and Director of the Rett Expertise Centre Netherlands-GKC, Maastricht University Medical Center, The Netherlands.

Terms of Use:

1. Licence to use the Guidelines:

a. You are allowed to download the Guidelines, store them on your computer and print them for your own personal use and to distribute a printed copy to other people (for example, members of a healthcare, education or social care team working with persons with Rett syndrome).

b. You are encouraged to use the Guidelines in your practice.

c. You are allowed to use the content of the Guidelines for education and training purposes (for example, to give a lecture or presentation about Rett syndrome).

d. You are not allowed to modify the content of the Guidelines or to add your own name and logos of your association without prior permission from the project coordinator (Dr. Gill Townend).

e. You must always acknowledge the authors of the Guidelines.

2. Intellectual property rights:

a. The intellectual property rights of the Guidelines remain solely with the Rett Expertise Centre Netherlands-GKC.

b. You are not allowed to sell the Guidelines for commercial gain.

3. Translation:

a. Translation into other languages is encouraged. However, you must obtain permission from the project coordinator (Dr. Gill Townend) prior to translation.

By downloading any of the versions below you are agreeing to the Terms and Conditions as stated above.

To download, simply click on the title of the version you want. Each version includes the front and back cover, author acknowledgements, table of contents, foreword and introduction. Please note, Appendices 2-6 are not available as separate downloads, they are within the full Handbook only.