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 […]

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 […]

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 […]

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 […]

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 […]

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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