Rett Syndrome Europe

On October 5th, 11 Rett families and eight carers met for information exchange in the Seminarhof Kletzmayr St. Marien, Austria. After the welcome and presentation of the daily program Stella and Gerhard Peckary reported on their participation in the 6th European Rett Syndrome Congress in Tampere (Finland). News from interesting studies on epilepsy, behavioural problems, […]

Since its foundation in 1995, the Hungarian Rett Syndrome Foundation has been organizing therapeutic summer camps for children and adolescents with Rett Syndrome. The girls are all with multiple special needs and in need of full care, so organizing the camp involves a lot of coordination and preparation. In Hungary, it is very difficult to […]

by Stella Peckary In Hipping, close to the lake Attersee, 22 Rett families with their girls/boys and siblings met on a sunny weekend in June. The Board of ÖRSG met on Friday afternoon for planning the organisation of upcoming events 2019/2020 and welcomed a new Board member – Elisabeth Nimmerrichter, who will also take over […]

AIRett devoted the first two days of June to its periodical National Congress organized this year in Cervia – “New Borders in Rett Syndrome: a Glance towards the Future” – with novel therapeutic international strategies being the main theme of the Conference. Rett families as well as experts interested in the syndrome (more than 250 […]

The Rett Disorders Alliance UK (Reverse Rett, Rett UK and FOXG1) are delighted to bring you The Rett Syndrome Health Checklist. The Health Checklist provides information to help with symptom identification and management including suggestions for drugs which may help and those which may cause difficulties for people with Rett syndrome. There are also links […]

Last week RSE brought dr Gvantsa Kvantaliani from Georgia in touch with Rett Expertise Centre of Maastricht. Here’s what she thought about her experience: I was very happy and had the honour to visit for a 1-week rotation in Maastricht University Medical Centre, Rett Expertise Centre with Professor. dr. Leopold M.G. Curfs. This was an […]

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 […]