Rare Disease Day takes place on the last day of February each year. Epidermolysis Bullosa (EB) is one of over 6000 rare diseases worldwide. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare disease and their impact on peoples’ lives.
The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals, and anyone who has a genuine interest in rare diseases.
Raise Awareness & Take Action
Raise awareness and show your solidarity with people living with a rare disease by posting on your social media! Use key rare disease and EB-specific facts to educate your followers and to show them that rare is many, rare is strong, and rare is proud.
Tag us in your post:
Facebook: @debraofAmerica
Instagram: @WeFightEB
Twitter: @debraofAmerica
LinkedIn: /company/debra-of-america
And don’t forget to use the hashtags #RareDiseaseDay and #WeFightEB!
Rare Disease Facts:
- 300 million people living with a rare disease worldwide
- Over 6000 different rare diseases
- 72% if rare diseases are genetic
- 70% of those genetic rare diseases start in childhood
Epidermolysis Bullosa Facts:
- Epidermolysis Bullosa, or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States
- There are many genetic and symptomatic variations of Epidermolysis Bullosa, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma
- About 200 children are born with Epidermolysis Bullosa every year in the United States
- About 500,000 people live with Epidermolysis Bullosa worldwide
Do you live with EB or care for someone with EB? Share your personal story on your social media or with friends to raise awareness and offer insight into life with a rare disease. Be sure to use the hashtags #RareDiseaseDay and #WeFightEB on social media.
Want your story featured on debra of America’s website? Email staff@debra.org with “Rare Disease Day Story” in the subject line!
Host an in-person or virtual Supporter Led Event to raise awareness and funds to go towards our mission! Past events include virtual runs, pancake breakfasts, bake sales, and more.
We’ll help you every step of the way. Email Jason at jason@debra.org to get started on your Supporter Led Event!
Are you on Facebook? You can raise funds for debra of America with Facebook Fundraisers! 100% of the funds you raise goes towards our mission.
Rare Disease Week on Capitol Hill will take place on February 22-March 2 and will bring together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.
No prior experience is necessary. Registration is free!
One way to engage your elected and public officials while also raising awareness is to obtain an EB Awareness Week Proclamation in your city or state. Although EB Awareness Week isn’t until October, it may take several months for officials to process your request.
Learn more
Donations make a direct impact on the thousands living with EB in the United States by funding our free supportive programs and the research for a cure.
Make a donation
Related Resources
About EB
EB is a rare connective tissue disorder with many genetic & symptomatic variations. All forms share the prominent symptom of extremely fragile skin that blisters & tears with any friction.
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Our Mission
“Because the cost of doing nothing is too great” is an axiom that defines our mission and directs all of debra of America’s actions as an organization.
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Other ways to get involved
There are many ways that you can join the fight against EB. Start an event, host a fundraiser, volunteer, and more!
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