The 17th November took place the Rett Syndrome Europe general assembly in London, UK where Lorna Jaffa, representative from RettUK, welcomed the delegates to the meeting.
14 countries were represented that day and two researchers; Angus Clarke and Laurent Villard were also invited.
Member countries each gave a brief report about their associations. Martine Gaudy, the RSE secretary and delegate from France, introduced the Activity Report and summarized the highlights of the year including:
- The setting up of a new website;
- The involvement with Rare Connect;
- An invigoration of the association.
Oliviero Dell’ Oro, the RSE treasurer and delegate from Italy, then presented the financial report which was approved by the GA.
During lunch a delegate from each country made a short presentation to camera. This will be made into a short film about the work of RSE. The film will be upbeat and will focus on activities from each country. The film will be put on the RSE and RareConnect Websites.
After lunch Thomas Bertrand (French delegate) explained about the RSE website that went live in June and is being viewed on a daily basis. The site is regularly updated but members are encouraged to send articles and photographs, including those from their own websites and monthly articles from each country are expected.
Thomas then explained about the RareConnect website that was set up by Eurordis and NORD and is available to people in both Europe and America. It deals with many rare conditions and can be accessed in 5 European languages: English, French, German, Italian and Spanish. Actually 106 members are registered and representatives from each country were asked to publicise RareConnect to their members.
Rob van der Stel of Stichting Terre, a foundation in the Netherlands, explained his plans for the European Congress that will be from 17 – 19 October 2013 at the Maastricht Exposition and Congress Centre. It will deal with research updates and preventative management. Abstract submissions are scheduled for December.
The 2013 General Assembly of RSE will be held during the Congress.
After the election of the board, in which Danijela Szili from Hungary was welcomed, Laurent Villard fed back on 7th World Congress in New Orleans, June 2012.
Angus Clarke then gave a presentation talked about the European Database and explained the added value of such database for research on Rett Syndrome. The database contains 1880 patients from 12 countries. The full database contains 293 clinical elements and 16 genetic elements. The Core data set contains 62 clinical and 7 genetic items.
It was proposed that 2 RSE members would be part of the board of the European database to follow its development.
