RARE DISEASE DAY

February 28th is Rare Disease Day, a day to raise awareness about rare diseases like EB and their impact on patients' lives. The research we fund at EBRP not only has the potential to treat and cure EB, but provides pathways to cures for the 7,000 other rare diseases that affect over 400 million people worldwide. This February, help us reach out $10,000 goal to further cutting-edge research to #healEB and many others.

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Fast facts about rare disease

What is Rare Disease Day?
Rare Disease Day is an annual celebration to raise awareness for rare diseases to improve the lives of individuals and families impacted by them around the world. 

What is a Rare Disease?
In the USA, a rare disease is defined as a condition affecting fewer than 200,000 people. In Europe,  a rare disease is defined as a condition affecting 1 in 2,000 people. An estimated 7,000 rare diseases exist, and around 5,600 of them are genetic. Overall, 1 in 10 people are affected by rare disease - that's 400 million people worldwide.
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Is EB a rare disease?
Yes, EB is a rare disease estimated to affect 30,000 people in the USA and 500,000 worldwide. 

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EBRP's Model to cure rare disease

EB Research Partnership is committed to finding a cure for EB, and in the process, pioneering the path to cure all rare disease. Learn about our Venture Into Cures methodology below.

Download Campaign Prospectus

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#COMESAYHI with eli & Eddie vedder

EBRP Co-Founder Eddie Vedder joined EB Superhero Eli and his sister Lily to spread their "Come Say Hi" movement with the world. Eli and Lily encourage people to embrace others' differences, a message of inclusivity

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Sources

“RARE Facts.” Global Genes, 2019, globalgenes.org/rare-facts/.
“What Is a Rare Disease?” Eurordis, Rare Diseases Europe, 2019, www.eurordis.org/content/what-rare-disease.
“FAQs About Rare Diseases.” Genetic and Rare Diseases Information Center, U.S. Department of Health and Human Services, 2017, rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases.
“Rare Disease Day 2020 - 29 Feb.” Rare Disease Day - 29 Feb 2020, 2020, www.rarediseaseday.org/.