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 Congress – 1st and 2nd June 2019
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 […]
Congratulations to dr Gillian Townend with her PHD
We congratulate Dr. Gillian Townend with her successful PhD defense the 4 th of July at the University of Maastricht Rett Syndrome: “Recognising the Communication Challenges, Needs and Potential of Individuals Living with a Rare Disease” It was an honour to be there and we would like to express our gratitude in name of all […]
Rett Disorders Alliance Health Checklist
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 […]
News from the Russian Rett Association
The Rett Syndrome Association (Russia) has been implementing a project on creating Rett syndrome resources in Russian language since 2017. The start to the project was given by the VIII World Congress on Rett syndrome, which was held in Kazan in May 2016. In 2018, within the framework of the “Mutual Support” project (winner of […]
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 […]
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 […]
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 […]
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 […]