Dystrophic Epidermolysis Bullosa Research Association of Canada
DEBRA Canada is a voluntary, non-profit organization dedicated to providing support for families affected by Epidermolysis Bullosa (EB) and to heightening Canadians' awareness of this challenging disease.
DEBRA Canada is a registered charity, the only organizational body in Canada exclusively committed to the care and support of families affected by EB and to improving their quality of life.
In the coming years, dEBra Canada hopes to greatly extend its services. New services will range from funding research projects to offering specialist nursing care and other professional services to children and adults with all forms of EB, their families, and caregivers.
DEBRA Canada's purpose is to: 1. Provide a focal point to enable and empower individuals and families affected by EB to help themselves and to support one another by sharing their personal experiences and knowledge; 2. Increase awareness and knowledge of EB and DEBRA Canada throughout the country, but particularly at the government level and within the health and medical community; 3. Act as an advocate for improvements in health, medical, educational, social, economic and government policies and services in both public and private policies institutions on behalf of all EB sufferers and their families; 4. Organize meetings, roundtables and conferences for all EB sufferers, their families, caregivers, health and medical practitioners and government officials; and 5. Produce and publish information materials for the education, health and medical professions and the general public that will be available in both official languages.