In 2017, we launched our communication project;  to give every person with Rett syndrome the opportunity to reach their communication potential so their voice can be heard.  We have Augmentative and Alternative Communication (AAC) training days for families and professionals at various locations around the UK and a fantastic booklet,  An Introduction to AAC for People with Rett Syndrome and other Complex Communication Needs giving advice, tips and personal stories using all forms of communication.

In 2018, we were delighted that Dr Gill Townend joined the project and has led the development of A Speech & Language Therapist Network for any speech & language therapist or assistant,  supporting someone with Rett syndrome in the UK. As well as annual study days, you can also benefit from regular webinars. Membership of the Network is free!

In the Resources area you will find information on eye gaze technology  We also now have loan devices – these can be borrowed after a parent or carer has attended an AAC training day plus a communication session with the person with Rett syndrome.  Please keep an eye on our communication events page for more information on when and where they will be.

In addition, to provide you with ongoing, local support with communication, we have recruited and trained Regional Communication Champions who are facilitating ‘coffee and chat’ events where parents and carers can discuss, problem solve and get support in communication. There are also ‘out and about’ groups that provide a rich opportunity to practise all forms of communication in a supportive environment. Please go to the communication events page to see what is going on in your area.

In the resources area of the communication section of the website, you will find some documents on how to get started using no tech or low tech communication. We hope you find the information helpful and we will add more videos and resources soon so keep looking back! If there is anything else we can support you with on your communication journey please get in touch.