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6th European Rett Syndrome Conference, Tampere Finland

6th European Rett Syndrome Conference, Tampere Finland

The 6th European Rett Syndrome Conference took place in Tampere, Finland on September 27th and 28th. The Finish Rett Syndrome Association did an excellent job and was incredibly hospitable to around 180 participants from 18 countries worldwide. Over the course of these two days, participants were invited to join parallel sessions. Many excellent speakers well-known […]

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Austrian Rett Syndrome Association Family Information Day

Austrian Rett Syndrome Association Family Information Day

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, […]

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Dr Gvantsa Kvantaliani from Georgia visits Rett Expertise Centre of Maastricht

Dr Gvantsa Kvantaliani from Georgia visits Rett Expertise Centre of Maastricht

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 […]

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ActivRett Survey from Telethon Kids Institute

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 […]

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Rare Marometer Voices logo

Rare Barometer Survey on availability and experience of treatments

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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Grant call for research by FinRett

Grant call for research by FinRett

FinRett is a foundation created to finance research projects for the cure or improvement of Rett syndrome. It emerged in 2017 within the framework of a Collaboration Agreement between the Catalan and Spanish Rett Syndrome Associations, unifying the donations made by different associations, organizations and individuals which are aimed at the scientific investigation of Rett […]

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