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About dEBra Canada
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dEBra Canada is a voluntary,
non-profit organization dedicated to providing support for 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:
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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.
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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.
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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.
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Organize meetings, roundtables and conferences for all EB sufferers,
their families, caregivers, health and medical practitioners and
government officials.
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Produce and publish information materials for the education, health
and medical professions and the general public that will be available in both official languages.
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