Rare Disease Day LogoRare 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.

Learn more about Rare Disease Day 

Raise Awareness & Take Action

Spread the word on social media

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.  

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 

Download and share the official Rare Disease Day Graphics

Share your story online or with friends

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 a Supporter Led Event or Online Fundraiser

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.

Start a Facebook Fundraiser

Take Part in Virtual Rare Disease Week on Capitol Hill

Rare Disease Week on Capitol Hill brings 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! 

Learn more

Request an Official Proclamation

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 

Make a donation

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

Young boy with EB. 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. 

Learn More
Group of families. 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
dash4debra Supporter Led Event. 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