Members of the board
I have been a researcher at the Rett Expertise Centre Netherlands since 2013, and from 2018 have also been project lead for Rett UK’s Communication and Education Support.
I began working with people with Rett Syndrome at San Paolo Hospital in Milan in 2005, and soon after that in 2006 I had the opportunity to visit the Rett Clinic directed by Dr Budden in Portland, Oregon, USA.
I am a consultant paediatrician specialising in paediatric neurology and rare diseases. I work at the Center for Rett Syndrome and Center for Rare Diseases at the University Hospital Rigshospitalet in Copenhagen, Denmark.
Professor at Dept. Of Pediatrics, University Göttingen, Germany. Head of department at Klinik für Neuropädiatrie und Sozialpädiatrisches Zentrum.
Member of the RSE Executive Board. She has been working as a doctor of medicine since 2007, and since 2014 as a specialist in clinical biochemistry. Lives and works in Serbia.
Danijela Szili has been active as a parent, and patient advocate since 2011. Being a pharmacist and having a multilingual background has helped her a great deal in her charity work.
I work as a Speech Language Therapist (SLT) at the Swedish National Center for Rett Syndrome and Related Disorders. Since 2021, I am also an associated researcher at Uppsala University.
Professor Karen Spruyt, PhD, HDR, National Institute of Medicine and Health (INSERM) - NeuroDiderot, Université de Paris (France), earned her degree in child, adolescent, and adult clinical psychology in Belgium.
Professor Meir Lotan, MScPT, PhD is a physiotherapist working as a senior lecturer at the School of Health Sciences, Department of Physical Therapy, Ariel University Center of Samaria, Ariel, Israel.
Orthopedic surgeon with upper focus area extremity including arthroscopic shoulder surgery 17 years of experience, of which 14 years in a self-care setting. Strong in evidence-based and at the same time individual, patient-centered care.
Dr. Marschik got his doctoral degree in Clinical Linguistics at the Karl-Franzens University of Graz and his doctoral degree in Medical Sciences at the Medical University of Graz.
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.
- 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.
- To share education opportunities and models, by promoting webinars and online training materials from different countries and looking for funding for translation 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.