Recessive Dystrophic Epidermolysis Bullosa (RDEB)
Recessive Dystrophic Epidermolysis Bullosa (RDEB)

Advocacy & Educational Resources 

 

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Dystrophic Epidermolysis Bullosa Research Association of America

The Dystrophic Epidermolysis Bullosa Research Association of America (debra), is the only national non-profit dedicated to funding research and providing free services and programs for those with Epidermolysis Bullosa (EB).

debra News

Feb 17, 2016—The Virginia House of Delegates unanimously passed a resolution recognizing debra of America’s support of all EB families in the state of Virginia

 

debra of America Video: Rafi’s Story—It Won’t Hurt to Watch

This is Rafi Lily’s story, who is living with Epidermolysis Bullosa (EB), a rare and life-threatening skin disorder that affects children from birth. Learn more about Rafi and Rafi’s Run here.


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EB Research Partnership

The EB Research Partnership is the largest nonprofit dedicated to funding research so that children with EB can grow up to live full, pain-free lives.

 

EB Research Partnership Video: This is Michelle

This is the story of Michelle Hall. She was born with a severe form of EB. Now, for the first time, she has hope that she and thousands of others, will see a cure.

 

EB Research Partnership Video: Mikey’s World

This is a ‘day in the life’ of Michael Fullmer, who is living with Epidermolysis Bullosa (EB), a rare and life-threatening skin disorder that affects children from birth.


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National Organization for Rare Disorders (NORD)

NORD provides a unified voice for people battling rare diseases – those courageous individuals, and the parents and other caregivers seeking to help them, so that they won’t have to fight that battle alone.


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Global Genes

Global Genes™ is one of the leading rare disease patient advocacy organizations in the world. Their mission is to build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease.


Photo: Courtesy of debra–The Dystrophic Epidermolysis Bullosa Research Association of America. Used with permission.