Members of the board
Gill Townend – Chair of SAB
Aglaia Vignoli, Ana Abdala, Anne-Marie Bisgaard, Bernd Wilken, Bojana Milanov, Danijela Szili, Goran Cutilo, Helena Wandin, Jean-Christophe Roux, Meir Lotan, Michelle Stahlhut, Peter Marschik, Sonia Guil
Aims of Board
- To promote and support research (basic and applied) to improve the quality of life of people of all ages affected by Rett Syndrome and their families.
- To gather and disseminate up-to-date research information.
- To share and promote good and best practices according to current available evidence.
- To promote multidisciplinary collaboration between countries within Europe and with other countries across the globe.
Specific areas of responsibility
- To build on work previously undertaken by the RSE Research Subcommittee (now incorporated into the SAB) to map research and researchers across Europe (and further afield).
- To keep abreast of new research publications and share research updates with member associations in layman’s terms, by:
- setting up a research area on RSE website, where new publications can be shared according to date of publication (what’s new), and theme/topic, with a summary of key findings, and a link to each article (in the future this could be set up using data science techniques to make information available);
- setting up quarterly research newsletters to be circulated to member associations.
- To shape the research agenda by setting up research collaborations and pro-actively looking for funding opportunities especially within Europe.
- To develop research links and collaborations with countries outside Europe, e.g. through existing links with inter alia Rettsyndrome.org and the North American Rett Clinics Network, and with the Telethon Kid’s Institute team in Australia.
- To share education opportunities and models, by:
- promoting webinars and online training materials from different countries;
- looking for funding for translation (use of voice-over, sub-titles) of webinars and online training resources so that multiple countries can benefit.
- To promote regular sharing of research and practice information between member associations, through organising and coordinating the “country updates” session at the bi-annual (European) Rett conferences.
- To review and comment on research requests received by RSE.
- To explore the role of RSE in facilitating the collaborative development of and access to Rett databases in Europe and internationally.
Please keep an eye on this page as their work develops. We will be sharing publications from each of the board members and bringing you the latest news on research developments from Europe and further afield.