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“To
heighten awareness of EB and |
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“To
heighten awareness of EB and |
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dEBra Canada hosted its first-ever family conference at Sick Kid’s hospital in Toronto on Sept 30, 2006. Families from across Canada were in attendance with Newfoundland, Quebec, Ontario, Alberta and B.C. all represented. In total about 35 families attended the conference. The main goals of the conference were to provide high quality, current information to families living with EB as well as to provide an opportunity for networking and sharing of ideas and experience among the families. We are pleased to say that both goals were achieved. The conference speakers included a number of doctors from the EB team at Sick Kids, Pat Coutts, a nurse with specialized training in wound management, and Jackie Denyer, one of dEBra UK’s pediatric nursing team. Families were provided time to network during coffee breaks, lunch, interactive sessions, and at the dEBra Canada hospitality suite. A children’s program was provided for children 2 and over. The older children (over 12) also had an opportunity to participate in a focus group led by the Sick Kid’s EB team social worker, Nimrita Aujla. We wish to sincerely thank our sponsors- Astellas Foundation, Mölnlycke, and Ambulatory Footwear. The degree of support we received this year allowed dEBra Canada to assist families with the cost of accomdation in Toronto.
Our
goal is to host our next conference in 2008. As
suggested at the conference,
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