By Jordi Serra.
On March 2, 2013 took place the 3rd Catalan Rett Syndrome Day:
“Update on Research, Emotional Wellness, Disability and Guardianship at the Teknon Medical Center in Barcelona”
http://www.teknon.es/jornada-rett/programa
In this conference, the Teknon Foundation, and the Catalan Association for Rett Syndrome provided the latest information on Rett research and updates for early diagnosis and better treatment and care for children with Rett syndrome.
Amongst the personalities present for this event:
Ms. Glòria Renom
Member of the Parliament of Catalonia
Mr. Thomas Bertrand
President of Rett Syndrome Europe
Dr. Josep Torrent
CEO of the foundation Dr. Robert
Dr. RoserValles
Advisor to the Office of the Ministry of Health
Ms. Monica Martinez
Chief of the Teknon Foundation
Dr. Jose MaPayà
Medical Director of the Medical Center Teknon
Mr. Jordi Serra
President of the Catalan Association of Rett Syndrome
Mr. D. Juan José García Fenoll
President of the Spanish Association of Rett Syndrome
Researchers, Doctors, Therapists and Social workers gave presentations on the following topics:
– PRECLINICAL UPDATE ON RESEARCH ON RETT SYNDROME
– DIFFERENT GENETIC STUDY OF GENES INVOLVED IN THERETT SYNDROME (MECP2, CDKL5 and FOXG1). GENETIC COUNSELING TO THE FAMILY
– EPILEPSY IN RETT SYNDROME. CHARACTERISTICS AND RECOMMENDATIONS
– DAILY ACTIVITIES IN A GIRLS DAY CENTRE WITH RETT SUPPORTED BY THE AREA OF PHYSIOTHERAPY
– EMOTIONAL WELLNESS
– DISABILITY AND PROTECTION
As mentioned, we had the collaboration of a great number of professionals, and some of them very famous. This is the case of the Spanish specialist in Rett Syndrome, Dr. Mercè Pineda from Hospital Sant Joan de Deu and the researcher Dra. Dori Huertas from Bellvitge Biomedical Research Institute (IDIBELL).
There were about 180 people attending the conferences in site, and thanks to a video streaming system, there were an average of 190 people even more connected, so, it was a real success of audience with almost 400 people.
Furthermore, there were families attending the congress in Barcelona, coming from different parts of Spain as Valencia, Mallorca, León, Zaragoza, among others. People from different parts of South America were attending the congress as well via internet.
This annual event started three years ago, as a consequence of an agreement between Teknon Foundation and the Associació Catalana de la Síndrome de Rett. We wish we could to repeat it every year, with the aim to help families and to promote the Rett Syndrome in our society.
