European Working Group on Rett Syndrome

What is EWGRS

The EWGRS was formed and gathered for the first time in 2007. Its mission is to promote research on Rett Syndrome mainly in Europe and to facilitate the formation of collaborative networks engaging both researchers and parents associations.The activity of the EWGRS started with the organization of a scientific meeting that covered multiple aspects of Rett Syndrome and hosted outstanding speakers and more than one hundred attendees. The success of this first initiative is also testified by the formation of EuroRETT, a European Network on Rett Syndrome, involving more than 50 researchers and clinicians from 5 different countries, that got approved by the EC and funded for the next three years. Furthermore, two mailing lists, one for researchers and one for parents, have been formed to discuss Rett related subjects and the future of the EWGRS. You can join the list following the instructions in the dedicated link.

Formed by scientists and parents for scientists and parents, the only scope of the EWGRS is the acceleration of the development of a cure for patients affected by Rett Syndrome or related diseases. 

The future EWGRS

Based on the suggestions from the evaluation schemes of the first edition of the EWGRS, a second edition of the meeting has already been scheduled for September 2009. While the first two editions of the EWGRS have been and will be financed almost entirely by ProRETT Ricerca and the scientific program organized by Charlotte Kilstrup-Nielsen and Nicoletta Landsberger (University of Insubria), we hope that future editions of the meeting will be held in other European countries and organized by a scientific committee, elected or chosen by researchers. The future meetings might be financed as a joint venture by more parents associations, with the help from different sponsors and, in part, by the researchers.

The researchers’ mailing list should be used to start discussing how to organize the 2011 meeting. We need to decide when and where we should choose the scientific committee and the future location.