The EB Foundation Butterfly
EB Research Partnership (EBRP) is the largest global organization
dedicated to funding research to treat and cure Epidermolysis Bullosa (EB).
What is EB?
EB, or Epidermolysis Bullosa is a life-threatening disorder that affects the skin. It’s a genetic disorder that causes the skin to lack a certain important protein. EB causes severe pain, disfigurement, and wounds that won’t heal. Depending on which of the four types of EB is diagnosed, life expectancy ranges from infancy to 30 years of age. There is currently no cure for EB, nor are there treatments available.
What makes the EB Research Partnership special?
The Epidermolysis Bullosa Research Partnership was founded in 2010 with the goal of finding a cure for EB, as quickly as possible. To date, they’ve raised over $50 million dollars for research towards finding a cure for EB and other rare diseases.
The EBRP works tirelessly not only to find a cure for EB, but to support the research that could potentially help millions with rare diseases. Their model of sharing findings and reinvesting in science sets the standard for a new era of medical research.
The EB Foundation’s Butterfly
The Butterfly Symbol
The Butterfly Necklace
Crafting fine silver & enamel
has become my newest crayon.