Epidermolysis Bullosa (EB)

Epidermolysis Bullosa (EB)

Advocacy & Educational Resources 


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 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.


    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.

    Meet Rowan

    Rowan is living with Recessive Dystrophic Epidermolysis Bullosa. EB Research Partnership has given Rowan’s parents hope for a cure for their daughter and all others living with this devastating disorder.


    Meet Brady

    Brady the Brave and his family won’t stop fighting until they find a cure.


    Rare Disease Day

    Rare Disease Day® occurs on the last day of February each year to raise global awareness of rare diseases. Learn more about this special day that honors those living with a rare disease and its impact on their lives.


    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.


    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.  

    EveryLife Foundation for Rare Diseases

    The EveryLife Foundation for Rare Diseases is a nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.

    Pediatric Dermatology Research Alliance

    In response to unmet research needs in pediatric dermatology that require collaborative, multicenter efforts, dermatology leaders created the Pediatric Dermatology Research Alliance (PeDRA) in 2012. PeDRA is the research arm of the Society for Pediatric Dermatology.

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

    Please note: The third-party sites listed on this page are for informational purposes only. Castle Creek Biosciences makes every effort to offer the most useful and accurate resources available to people living with epidermolysis bullosa; however, we do not endorse and are not responsible for the content found on these third-party websites.