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).
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.
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.
Fibrocell is honored to support these EB Research Partnership events:
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.
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.
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™ 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.