7th South East European Rare Disease Conference

7th South East European Rare Disease Conference

This conference took place on the beautiful lake Ohrid. Ohrid and Lake Ohrid were accepted as Cultural and Natural World Heritage Sites by UNESCO. Ohrid is one of only 28 sites that are part of UNESCO’s World Heritage that are Cultural as well as Natural sites. Regional meeting for rare diseases patient advocates took place […]

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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 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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EURORDIS Winter School 2019

EURORDIS Winter School 2019

The second edition of EURORDIS Winter School was an event I have longed for months. The training was about scientific innovations and translational research and was held in the prestigious Imagine Institute in Paris. I was very happy and honoured to be one of the 30 selected applicants from the 137 that applied. I am […]

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The Greek association “Angels on Earth”

The Association of Parents and Friends of People with RETT Syndrome “Angels on Earth” is a non profit organisation, which aims to undertake every activity that will help people with RETT Syndrome and their parents. The association was created in 2011. The main goals of the association include: a) support and information for the families […]

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9th World Rett Syndrome Congress, Australia – 30 September to 3 October 2020

Rett Syndrome Association of Australia is looking for potential presenters by tapping into the local knowledge of member Associations. We would welcome the names, contact details and specialities of those persons in your part of the world, whom it is strongly felt would have something to present which would be of benefit to those involved […]

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Rett Syndrome Europe meets in Copenhagen

            RSE held its general assembly on 26/10/2018 to present the activity report and to discuss future plans. This year’s GA meeting took place in Copenhagen, Denmark. Our friends from Landesforeningen Rett Syndroms hosted the meeting and kindly arranged the organisation of the two days To make it more interesting, […]

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French Rett Syndrome Family Days – 06/10 and 07/10/2018 in Paris

The French national days for Rett syndrome celebrated the 30 years anniversary of the French Rett Association. There were 223 participants. We could see in the corridor a nice overview of the history of the association. As usually the themes presented were very interesting: you can see the program in the picture. A surprising and […]

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Rett Rome Report

Rett Rome Report

Rett Rome 2018 took place from September 27-29th and gathered 170 participants from 4 continents and 17 different countries. The aim of this very well organized scientific meeting on the 27th and 28th was to provide a platform for discussion on recent advances in basic, translational and clinical research on Rett syndrome. The meeting also […]

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