Many thanks to everyone who completed our Membership Survey. It is really helpful in allowing us to plan better to meet your needs and interests as members. Please take a look at a brief report of the results and our plans of action as a response to your expectations. The aims and activities of RSE […]
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 […]
Don’t miss the chance to make your voice heard. Take 10 minutes to complete the new Rare Barometer survey on experience of treatments and share your views. Survey closes on 30 April. Survey available here in 23 languages: http://bit.ly/eurordis-survey Learn more about the survey, who can respond and how the results will be used: Experience […]
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Dr Tim Benke, Medical Director of the Rett Center of Excellence at Colorado Children’s Hospital is the lead Principal Investigator in a study that is seeking to understand the lived experience of Males with Rett syndrome via their parent report. He would love to have responses from parents in Europe COMIRB: 23-0075PI: Dr. Tim BenkeV. […]
Following our Network Support and Research Event we would like to share a video of Walter Kaufmann presentation “Burden of Illness in Rett Syndrome: Initial Evaluation of a Disorder-Specific Caregiver Survey”. In this talk, Walter Kaufmann will present an overview of the Burden of Illness in Rett Syndrome survey. Previous studies have shown that individuals […]
The team at Telethon Kids in Australia led by Dr Jenny Downs have developed a new online resource to help families and carers support people with Rett syndrome to live more physically active lives. They are inviting family members and carers anywhere in the world to look at the ActiveRett web page and evaluate it […]
We are happy to share this section as a joint effort of our Scientific Advisory Board to bring the latest scientific knowledge closer to human language. Thus, for every article shared here you will find a short and simple lay summary, provided either by the authors of the articles, or some short reviews by our […]
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 […]
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 […]
