Canadian EB patients and their families face unique challenges as they seek the best treatment and care. In addition to barriers presented by our large country and by differing provincial health systems, the relative rarity of EB means that standards of care among Canadian health providers may vary significantly from one region to another.

One of dEBra Canada’s chief goals is to increase awareness of EB in the Canadian health care sector.

President Jocelyn Maggs is pleased to announce that dEBra Canada has received a grant from the McLean foundation to hire a researcher/project coordinator whose main tasks will be to gather information from across the country for dEBra members, and to distribute information to the key contacts in the health care sector who treat EB patients. The project coordinator will:

• identify treatment centres and neonatal intensive care units in each province.
• notify neonatal units and dermatologists in Canada about the range of support services dEBra Canada offers to EB families, and provide contact and medical literature to give to their patients, caregivers and families.
• assemble and distribute kits for staff in neonatal units that include samples of alternative kinds of diapers, nursing nipples, specialized bandages, sheepskin, and bedding. (The initial distribution will be 30 kits).
• send a questionnaire to EB families in Canada assessing current support services and requesting suggestions for improvements to these.

The McLean foundation was founded in 1945 by the late J.S. McLean to support charitable works mainly in the arts and education, but it also funds projects in health and general welfare.

dEBra Canada is grateful to the McLean Foundation for funding this significant project that will help it to achieve its mandate to increase awareness of EB and to continuously improve the standards of treatment and care for all Canadian EB patients.

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