About Us

Our first newsletter

 

 

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.

Executive Board
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

Our Colours:
maple leafs since we are Canadian …eh;

dark purple leafs to represent epilepsy;

lighter purple to represent dravet…as we are rare.

Memberships:
Canadian Organization for Rare Disorders (CORD)

Meetings Attended:
Epilepsy Toronto Annual Conference
Toronto, Ontario
May 10, 2014
Attendees: Guida, Ankie, Suzanne
Stakeholder Engagement Panel, National Population Health Study on Neurological Conditions
Toronto, Ontario
December 2013
Attendee: Patti
CORD Consultations Toward A Canadian Plan for Rare Diseases
Toronto, Ontario
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)
Fredericton, NB
September, 2013
Attendee: Patti

published feb 2013
last edit may 2014

Leave a Reply