Bill C-230
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2nd Session, 36th Parliament, 48 Elizabeth II, 1999
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The House of Commons of Canada
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BILL C-230 |
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An Act respecting a National Epidermolysis
Bullosa Awareness Week
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| Preamble
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Whereas epidermolysis bullosa is a group
of rare and debilitating genetic diseases
characterized by fragile skin and recurrent
blisters that causes affected individuals and
their families severe and devastating physical
and emotional pain and suffering as well as
financial hardship;
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Whereas epidermolysis bullosa is a
life-long disease for which there is no cure;
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Whereas the treatment of epidermolysis
bullosa consists primarily of dealing with the
symptoms of the disease and is largely
supportive;
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Whereas all forms of epidermolysis
bullosa require good nursing and support care
and severe forms of the disease require
intensive nursing care similar to that given to
patients who have been severely burned;
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Whereas the various problems
encountered by a person who suffers from
epidermolysis bullosa can be overcome with
the support of parents, family members,
friends, health and medical practitioners and
persons in the community at large who are
well-informed about the disease;
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And Whereas the Parliament of Canada
desires to encourage both public and private
investment in research and development into
treatments and a possible cure for
epidermolysis bullosa by raising awareness in
Canada about the disease;
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Now, Therefore, Her Majesty, by and with the
advice and consent of the Senate and House of
Commons of Canada, enacts as follows:
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SHORT TITLE |
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| Short title
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1. This Act may be cited as the National
Epidermolysis Bullosa Awareness Week Act.
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NATIONAL EPIDERMOLYSIS BULLOSA AWARENESS WEEK |
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| National
Epidermo- lysis Bullosa Awareness Week
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2. Throughout Canada, and in each and
every year, the last week in October shall be
known as ``National Epidermolysis Bullosa
Awareness Week''.
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