Celebrating Patient Achievements This National Awareness Week

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by Margarida Maia PhD |

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National Epidermolysis Bullosa Awareness Week is Oct. 25-31/Epidermolysis Bullosa News/rare balloons illustration

From sharing stories to spreading the word about epidermolysis bullosa (EB) in person and on social media, supporters are poised to mark National Epidermolysis Bullosa Awareness Week, which runs annually in the U.S. from Oct. 25–31.

According to the Dystrophic Epidermolysis Bullosa Research Association of America — coined as debra of America — this is a time to increase public awareness, to promote the need for a cure, and to encourage people to advocate for those living with the disease.

“Business owners, social media influencers, artists, straight-A students, and more — these are the people of our Epidermolysis Bullosa (EB) Community. EB can throw many curveballs and present challenges with its debilitating nature, but the individuals who are impacted by it are resilient and unstoppable in their pursuits,” the organization states on its webpage about Awareness Week.

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Our Global EB Community Continues to Inspire Me

As part of its program of activities and ideas, debra is inviting all interested to take part in its awareness campaign by submitting a story about themselves or their loved ones.

These stories should be about a special talent, strength, or achievement, as well as any challenges — and ways to counter them.

“This EB Awareness Week, debra of America is launching a campaign that celebrates our EB Community’s many strengths, talents, and achievements,” the webpage states.

Stories will be shared on the organization’s website, at the annual benefit event, and via social media outlets during Awareness Week. Some are already available here.

To help spread the word about the disease, the nonprofit also makes available two resources for download. One is a series of graphics designed to be shared on personal social media accounts — Facebook, Instagram, Twitter, or LinkedIn — to raise awareness and educate others about epidermolysis bullosa.

The other is a printable flyer that may be handed out in person within the community, at a workplace or school, or at the supermarket. It also may be shared online via email or on social media.

Other ways to participate involve hosting a virtual event such as a run, cooking night, or happy hour, or even starting a fundraiser with an online fundraising platform to raise money. To get help in hosting an event, please email Jason at [email protected]

A donation also may be made at any time.

Some advocates seek recognition from elected and/or public officials as a way to raise awareness about the disease. Those interested in doing this should check to see if an Awareness Week proclamation, or official declaration, may be obtained in their city or state.

The National Epidermolysis Bullosa Awareness Week was first approved by President Ronald Reagan and the U.S. Congress in 1984. Since 2006, it is set aside as the last week of October.