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. There is estimated to be over 10,000 rare diseases 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. 

​Follow us on social media to catch powerful videos from the EB community, learn more about rare disease research, and discover ways to make a difference beyond Rare Disease Day. Let's keep the momentum going together!

Please consider making a tax deductible donation to support our work before the year ends.

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Named after 8-year-old Elodie Kubik, who lives with a severe form of EB, the Plunge began as a local effort in Wellesley, Massachusetts, organized by childhood friends of Elodie’s mom. 

They wanted to do more for the family than just offer emotional support, and as they learned about EB and the larger rare disease community, it became clear how desperately diseases like EB need funding to find treatments and cures. In short: every dollar truly matters. Thus, the first Plunge for Elodie took place in 2018.
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The Plunge has now raised over $2.5M! Our goal in 2025 is to raise $600K, which will bring our total impact to over $3M!

You can join us at one of our confirmed locations, virtually, or start your own! 

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Our monthly giving program, #TheEffect, gives recurring donors access to exclusive content, merchandise and events.

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​Epidermolysis Bullosa (EB) is a devastating and life-threatening genetic skin disorder that affects children from birth. Individuals with EB lack critical proteins that bind the skin's two layers together, causing  the skin to tear apart, blister, and shear off, leading to severe pain, disfigurement, and internal and external wounds that may never heal. The majority battling EB are children, as many don’t live long into adulthood. ​

Children with EB are often called “Butterfly Children” because their skin is as fragile as the wings of a butterfly. With skin this fragile, everyday activities like eating, sleeping, walking and playing can become monumental tasks. Today, there are no cures for individuals battling EB, however, EB Research Partnership (EBRP) is dedicated to changing that

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Founded in 2010 by a group of dedicated parents, Jill Vedder, and Eddie Vedder of Pearl Jam, EB Research Partnership (EBRP) is the largest nonprofit funding research aimed at finding a cure for Epidermolysis Bullosa (EB).

Over the last decade, EBRP has made remarkable strides, including raising +$70M for life-saving research, contributing to a 20x growth in EB clinical trials, helping to accelerate the first two FDA approved EB treatments. 

 EBRP ensures sustainable funding for future EB research through an innovative Venture Philanthropy Model. Instead of simply making grants, EBRP searches the globe to strengthen and accelerate the most promising research projects. These projects are vetted through EBRP’s world-class Scientific Advisory Board.In exchange for funding, EBRP takes a financial interest in the work of research institutions. When those projects succeed, the returns are reinvested back into other promising EB research initiatives that are also scalable across thousands of other rare diseases. Every dollar invested at EBRP is multiplied — potentially many times over.
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EBRP’s Venture Philanthropy Model has been highlighted for its leadership by Harvard, Yale, MIT, the Milken Institute, and Stanford Social Innovation Review.

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​At EBRP, we have one bold audacious goal: heal and cure EB by 2030. In the process, we’re pioneering a model that can benefit the more than 400 million people affected by a rare disease. We are proud of the progress being made towards achieving that goal and more inspired than ever to continue advancing life-saving treatments and cures for EB families across the globe.

Please consider making a tax deductible donation
​to support our work before the year ends.

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