moved for leave to introduce Bill C-230, an act respecting a national epidermolysis bullosa awareness week.
Mr. Speaker, I am pleased to be able to introduce my private member's bill, entitled an act respecting a national epidermolysis bullosa awareness week.
The bill seeks to designate the last week in October as National Epidermolysis Bullosa week or, as it is known, EB week. By doing so it hopes to raise awareness of this very rare and debilitating genetic disease. In addition, we hope to encourage both public and private investment in research, development and treatment and to find a possible cure.
This disease is characterized by fragile skin and recurrent blisters that cause affected individuals and their families severe physical and emotional pain and suffering as well as financial hardship.
We hope that the bill will not only bring awareness to the disease but that we also learn about the disease, learn how to pronounce the disease or in short to call it EB disease.
(Motions deemed adopted, bill read the first time and printed)