Rare Disease Day takes place on the last day of February each year. 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 patients’ 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.
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
Activities & Ideas
Do you live with EB or care for someone with EB? Share your personal story to educate others and offer insight into your life with EB. We'll share your story on debra of America's social media!
If you'd like to share your story, please email email@example.com with "Rare Disease Day Story" in the subject line.
Host a virtual run, cooking night, or happy hour to raise awareness and funds for our mission! Invite your family, friends, and co-workers to educate them about EB and to let them know that this is a cause you care about. We’re here to help you every step of the way.
Email Jason at firstname.lastname@example.org to get started.
Post a photo of yourself on your social media with the hashtags #ShowYourRare and #WeFightEB to show your solidarity with people living with a rare disease. It's an opportunity to educate your followers about EB and its impact on your life!
You can also add the official Rare Disease Day social media frames and badges.
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.
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.Learn More 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.Learn More 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!Learn More