Per the DebRA web site: "National Epidermolysis Bullosa (EB) Awareness Week, is a time to increase awareness of EB, to promote the need for a cure and to spur advocacy on behalf of families suffering with the emotional, financial and physical burden of the disease."
EB Awareness Week was first established in 1984 by President Ronald Reagan! You can read the Proclamation here. It was later decided to hold EB Awareness Week the last week of October each year.
There is no right or wrong thing to do during this week. So people plans HUGE events within their community. Some pass around info at work, school or within their community about EB. Some (like me) post various blogs to educate and promote awareness about EB. It doesn't matter what you do, just do something!
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