EB Research Partnership Foundation Australia | Hospitality Charities

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B
The Pain Ends With A Cure
EB Research Partnership raises funds to invest in science & medical research that will lead to products and therapies for treating and ultimately curing Epidermolysis Bullosa, a group of life-threatening skin disorders that affects individuals from birth.

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                        EB Rearch Partnership

 

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                       EB Foundtion Donate Now

 
WHAT IS EB ?

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Epidermolysis Bullosa is a family of rare genetic disorders that affect the body’s largest organ: the skin.

Epidermolysis Bullosa (EB) attacks the body’s largest organ — skin — and not just the skin we see but also the connective tissue and organs inside of us. It results in open wounds that never heal, disfigurement, blisters,

bleeding, and ever-present pain. It is lethal for many. If that sounds awful, imagine how it feels to the children born with it!

Individuals with EB lack critical proteins that bind the skin’s two layers together. Without these proteins, the skin tears apart, blisters, and shears off leading to severe pain, disfigurement, and wounds that may never heal.

Children with EB are often referred to a butterfly children because their skin is as fragile as the wings of a butterfly.

EB Foundation Butterfly

OUR STORY

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When Tilly Wilkes was born with Epidermolysis Bullosa in 2011, it turned her family’s world upside down.

The Wilkes family had never heard of Epidermolysis Bullosa and to learn of the painful and cruel life their daughter was about to face was devastating.

Once they adjusted to taking care of Tilly and learning to bathe and bandage their newborn’s open wounds, they accepted the fact that Tilly’s condition wasn’t curable, and they were inspired to create awareness amongst their wide networks.

        EB Foundation Partnership Australia

 
 

The Cotton Ball, a large biennial fundraising Gala event, was created to raise funds for EB. The event so successful, and refusing to give up hope of a cure, the family and close friends established EB Research Foundation in 2016, their very own not-for-profit to raise significant funds to invest into science and medical research that will lead to a cure for Epidermolysis Bullosa.

Not long after, EB Research Foundation discovered another not-for-profit based in the USA with an identical story

They too were founded by EB families desperate to cure their children. Sharing the same mission, the two not-for-profits teamed up in 2018 and in July 2020, Australia merged with the US charity becoming EB Research Partnership (Australia), joining forces to expedite a cure for all types of EB as quickly and efficiently as possible.

 

Venture Philanthropy

Our innovative venture philanthropy business model is the engine behind our research program. We don’t just write cheques and hope for the best! We source the best ideas, get recommendations from our Scientific Advisory Board, and invest in meaningful therapies that has potential in the next three to five years. We negotiate deal terms (e.g. shares or stock) whether it is with a university, biotech, or publicly traded company. So, when the product is commercialized, we share in the profits and invest it right back into our research.

With this method, your donation has the ability to fund multiples of its original value for years to come.

Edder Vedder EB Foundation

 
 
We have a plan to defeat EB.
 It’s a plan that not only promises to
 change the lives of families fighting this disease but also
 to change the way rare disease treatments are found.
 
 
 
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