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.

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

Learn more about Rare Disease Day 

Activities & Ideas

Share your story

Take part in Rare Disease Day by sharing your EB story on our blog

If you'd like to tell your story, please email staff@debra.org with "Rare Disease Day Story" in the subject line.

Spread the word on social media

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 Facebook frame and Twibbon to your profile pictures.

Create an Online Fundraiser

Make a direct impact on the lives of those with EB by raising funds with our easy-to-use DIY platform.

Learn more

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

Plan a Supporter Led Event

Join thousands of supporters from across the globe to organize an event within your community to raise awareness and funds. Host a pasta night, bake sale, raffle, or community walk!

Learn more 

Take part in Rare Disease Week on Capitol Hill

Join our Government Affairs team at Rare Disease Week events through our partners at the Rare Disease Legislative Advocates (RDLA) and the National Institutes of Health (NIH)! 

For more information, please email our Director of Government Affairs and Legal Aid, Joe Murray, at joe@debra.org.

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 of individuals who live with EB in the United States.

Make a donation

Go beyond Rare Disease Day

Join the debra Impact Network, which provides opportunities throughout the year for people directly affected by EB to help better the lives of all those suffering from EB.

Learn more

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