dravet.ca is the Canadian Network for families, friends and caregivers of people with Dravet spectrum disorders.
dravet.ca will educate our families and the public about Dravet spectrum disorders by providing conferences, family retreats, and lectures to the medical community, and collecting and disseminating information on this topic.
dravet.ca will receive and maintain a fund or funds and will apply all or part of the principal and income therefrom, from time to time, to qualified donees as defined at section 149.1(1) of the Income Tax Act (Canada).
dravet.ca will undertake activities ancillary and incidental to the attainment of the above charitable purposes.
We are a working board, currently organizing our 2015 Family Retreat in Ontario and our 2016 Family, Physician and Researcher Conference in Alberta. We are in the middle of the process to award our $35,000 2015 Dravet.ca Research Award.
Information provided on this site is meant to complement and not replace any advice or information from a health professional
|Chair – Guida Quaglia Clozza
Vice Chair – Ankie Werdekker
Treasurer – Dawn Bellefeuille
Secretary – not filled*
Directors – Patti Bryant – Research, Mandy McKnight – Social Media
Maritime representative – Derrick Kearney
maple leafs since we are Canadian …eh;
dark purple leafs to represent epilepsy;
lighter purple to represent dravet…as we are rare.
Canadian Organization for Rare Disorders (CORD)
Epilepsy Toronto Annual Conference
May 10, 2014
Attendees: Guida, Ankie, Suzanne
Stakeholder Engagement Panel, National Population Health Study on Neurological Conditions
CORD Consultations Toward A Canadian Plan for Rare Diseases
November 11-12, 2013
Attendees: Guida, Mandy, Patti
CORD 2013 Fall Conference, Ottawa, Ontario
September 29-30, 2013
Attendees: Dawn, Mandy, Patti
CORD Consultations on Canada’s Orphan Drug Regulatory Framework(French)
published feb 2013
last edit may 2014