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ActivRett Survey from Telethon Kids Institute

Please take a moment for the ActivRett Survey from Telethon Kids Institute. Share your experiences in your daughter’s standing and walking activities. Your participation helps us understand what activities work, don’t work, are fun, and which activities enhance their quality of life. Your response helps us plan programs that focus on increasing physical activity, and […]

Key Research Papers

Development of consensus-based guidelines for managing communication of individuals with Rett syndrome Gillian S. Townend, Theresa E. Bartolotta, Anna Urbanowicz, Helena Wandin and Leopold M.G. Curfs Lay summary This paper describes how the Rett Syndrome Communication Guidelines were developed.Difficulties with communication have a profound impact on the lives of children and adults with Rett syndrome […]

Gillian Townend, MRCSLT, PhD

I have been a researcher at the Rett Expertise Centre Netherlands since 2013, and from 2018 have also been project lead for Rett UK’s Communication and Education Support.   I am a Speech and Language Therapist (SLT) with longstanding clinical and research experience, particularly in the field of Augmentative and Alternative Communication (AAC). In 2019 I was awarded a PhD by the University of Maastricht, for a thesis entitled: Rett […]

Call for RSE membership update

Dear Friends, As you are aware, RSE recently appointed a new board. We have been busy over the last couple of months reviewing things and thinking about future work etc. We are very keen to hear from our members; what is important to you, how can RSE help you and your families, what sort of […]

EURORDIS Membership Meeting 2017 – Full report

By Danijela Szili. EURORDIS Membership Meeting 2017 This year’s membership meeting took place in Budapest from 19-20 May. It gathered around 300 participants from all over Europe and some from USA, Iran, India, Canada and China. It started with EURORDIS General Assembly for members only. As it is the case every year the Activity Report […]

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