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
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!
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 firstname.lastname@example.org.
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