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 […]
Dr Gvantsa Kvantaliani from Georgia visits Rett Expertise Centre of Maastricht
Read full story • Comments are closed
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 […]
Read full story • Comments are closed
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 […]
Read full story • Comments are closed
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 […]
Read full story • Comments are closed
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 […]
Read full story • Comments are closed
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 […]
Read full story • Comments are closed
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 […]
Read full story • Comments are closed
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 […]
Read full story • Comments are closed
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, […]
Read full story • Comments are closed
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 […]
Read full story • Comments are closed
Upcoming Events
Sep
27
Fri
2019
all-day
6th European Conference in Tampe...
6th European Conference in Tampe...
Sep 27 – Sep 28 all-day
Registration is now open!! The program will have lectures from international experts. Subjects include epilepsy, learning and communication, physiotherapy and other rehabilitation, nutrition, sleep and neurological problems. The Conference is held in English. Full program[...]
Find your country
Advert
Support RSE
