We are excited to announce that the Ontario Rett Syndrome Association (O.R.S.A.) has been awarded a CIHR Meetings and Knowledge Dissemination grant of $25,000! This funding will allow O.R.S.A. to host the Canadian Rett Syndrome Symposium in April, 2014 in Hamilton, Ontario. This exciting event will take place simultaneously with O.R.S.A.’s “We R Family” Conference.
This will be the first time Canadian scientists, clinicians and the five provincial Rett syndrome associations will be brought together! The purpose of the symposium will be to foster collaborations between Canadian scientists, clinicians and provincial associations who have an interested in Rett syndrome.
The symposium will begin on Friday, April 25th with all three groups attending an evening dinner followed by short presentations of scientific results and an opportunity for discussion. On Saturday, April 26th, a morning meeting is scheduled for the scientists to further discuss future endeavours. The invited clinicians have a scheduled meeting on the Saturday afternoon. This will allow the clinicians to network, to learn about the four Rett syndrome clinics in Canada, and to discuss future collaborations, challenges and solutions in supporting a child/adult with Rett syndrome.
The last time the provincial associations met was October 1994 in Kitchener, Ontario. Association representatives will meet together on Sunday, April 27th. The goals of this meeting are to discuss challenges in sustaining a volunteer charity, develop possible solutions and future national collaborative projects. The meeting times were specifically chosen to allow the clinicians and association representatives to attend as many conference presentations as possible.
It is hoped by the end of the symposium and the conference, information will be transferred among scientists, clinicians, and provincial association representatives, and future collaborative projects will be established. A group of researchers will be asked to participate on a “Scientific Panel of Experts” at the family conference. This will allow information to be disseminated to parents and other conference attendees regarding ongoing research relating to Rett syndrome.
The conference agenda will also be packed with presentations on medical management, communication and literacy strategies, and complex-care plan development strategies. Along with the large contingent of Canadian experts, we will be pleased to welcome international speakers Dr. Jeff Neul and Judy Lariviere to our family conference.
Please save April 25-27th, 2014 to attend the We “R” Family Conference at the Courtyard Marriott in Hamilton, Ontario.
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