Through organizing events, sharing information on social media, and connecting with the epidemolysis bullosa (EB) community, the overarching goals of EB Awareness Week are to promote advocacy and to raise funds that will go toward finding a treatment.
“Epidermolysis Bullosa Awareness Week (Oct. 25–31) is a time to increase awareness of EB, to promote the need for a cure, and to spur advocacy,” the nonprofit Debra (for Dystrophic Epidermolysis Bullosa Research Association of America) states on its website.
EB is a group of rare connective tissue disorders marked by extremely fragile skin, estimated to occur that 1 in every 20,000 births in the U.S. Over 5,000 people in the U.K. and an estimated 500,000 people worldwide have the condition.
National EB Awareness Week was first established in the U.S. by President Ronald Reagan in 1984. The week’s official recognition was shifted to the last week of October by the Congress in 2006.
The establishing legislation states that the week’s purpose is to raise public awareness of EB, to recognize the need for a cure, and to encourage U.S. citizens and groups to support events that promote an understanding of the disease and how it affects both patients and their families.
For the U.S., Debra has compiled a series of graphics that individuals can download and share on social media, which showcase general awareness week information and address commonly asked questions about the disease. The website also has a flyer about EB and awareness week that can be printed and shared online.
Resources are also offered to encourage local governments to support awareness week efforts with an official proclamation, and to connect and collaborate with the community using EBConnect.org, a private online network.
EBConnect also hosts the annual Debra Care Conference (DCC), which is ongoing and runs through the end of awareness week. DCC hosts webinars from researchers, advocacy groups and others, with online material available at the EBConnect website.
In line with these efforts, the U.K. branch of DEBRA has scheduled an event series for awareness week, aimed at reinforcing the services and support networks that the organization makes available to the EB community.
The slogan for the U.K. event is “Aware. Share. Prepare.” This refers to initiatives designed to raise awareness of Debra services, share experiences with other members, and stay updated with the latest information from researchers, healthcare experts, and the organization’s Community Support Team.
Guest speakers include specialists with Guy’s & St. Thomas’ Hospital, Birmingham Women’s & Children’s Hospital, and Great Ormond Street Hospital, EB diet experts, as well as leaders within Debra, including community support managers, and the organization’s research director.
Also included are events catered to individual patient needs, including going to school and being a teenager or young adult with EB.
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