DebRA of America
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Mission Statement
The Dystrophic Epidermolysis Bullosa Research Association of America (DebRA) is dedicated to finding a cure for Epidermolysis Bullosa (EB)—The Worst Disease You've Never Heard Of.™ EB is a rare genetic skin disease causing chronic, painful blistering affecting 1 in every 20,000 live births in the US.
About This Cause
WHAT IS EB? Epidermolysis Bullosa (EB) is a rare genetic skin disorder that causes the skin to be so fragile that the slightest friction can cause severe blistering - inside and outside the body. It is present in 1 out of every 20,000 live births in the US. It can occur in every racial and ethnic group, and affects both sexes equally. There is currently no cure, and the research is on-going. Severe forms of EB cause patients to live with constant pain and scarring. The worst forms of EB lead to eventual disfigurement, disability and often early death. There are many patients who are diagnosed with milder forms, which, while they can be extremely difficult to live with, are non-disfiguring and non-lethal. HOW WE HELP New Family Advocate Program - www.debra.org/parents Wound Care Clearinghouse - www.debra.org/woundcareclearinghouse EB Nurse Educator - www.debra.org/nurse Family Crisis Fund - www.debra.org/familycrisisfund Patient Care Conference - www.debra.org/pcc2014 Smile Fund - www.debra.org/smilefund Resources for Families - www.debra.org/resources DebRA of America has helped fund 30 grants in 9 countries. 89.4 cents of every dollar donated to DebRA of America funds our programs, services and research for a cure. www.debra.org/donate