Rare Disease Day Logo

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.

Learn more about Rare Disease Day 

Activities & Ideas

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!

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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.

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Spread the word on social media

Add the official Rare Disease Day Facebook frame to your profile picture! Share your rare disease story or educate others about EB with your personal social media accounts. Don’t forget to use the hashtags #ShowYourRare and #WeFightEB in your posts!

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 

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.

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Make a donation

Donations make a direct impact on the thousands of individuals who live with EB in the United States.

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. 

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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. 

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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