Bill 123 2001

An Act proclaiming
Epidermolysis Bullosa
Awareness Week

Preamble

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.

Epidermolysis bullosa is a life-long disease for which there is no cure.

The treatment of epidermolysis bullosa consists primarily of dealing with the symptoms of the disease and is largely supportive.

All forms of epidermolysis bullosa require good nursing care and support care, and severe forms of the disease require intensive nursing care similar to that given to patients who have been severely burned.

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 practioners and persons in the community at large who are well-informed about the disease.

The Legislature of Ontario 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 Ontario about the disease.

Therefore, Her Majesty, by and with the advice and consent of the Legislative Assembly of the Province of Ontario, enacts as follows:

Epidermolysis Bullosa Awareness Week

1. The last week in October in each year is proclaimed as Epidermolysis Bullosa Awareness Week.

Commencement

2. This Act comes into force on the day it receives Royal Assent.

Short title

3. The short title of this Act is the Epidermolysis Bullosa Awareness Week Act, 2001.

EXPLANATORY NOTE

The Bill proclaims the last week in October of each year as Epidermolysis Bullosa Awareness Week.