Support & Resources
The Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) is the only U.S. nonprofit providing all-inclusive support to the EB Community, through funding research for a cure and by providing free programs and services for those with: Epidermolysis Bullosa (EB) - "The Worst Disease You've Never Heard Of."
EB is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). There is no treatment or cure. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Learn more about EB
EB NURSE EDUCATOR
Get live help from a registered nurse experienced in EB care. Services are available in English and Spanish.
DVDS: WHAT IS EB? + YOUR WELCOMING CLASSROOM
This two-part DVD was developed by the multidisciplinary Epidermolysis Bullosa Team at The Children’s Hospital of Colorado, and is endorsed by debra of America. It is a video guide for making the school experience supportive and academically challenging for students with EB.
debra of America has created business size EB Cards that can be passed out in your community - to local store owners, other parents, neighbors, at community centers - quickly explaining what EB is and how it affects you/your child.
CURRENT RESEARCH TRIALS
Researchers from countries around the globe are investigating new therapies for EB. Learn about studies that are currently recruiting patients.
INSURANCE ISSUES & SOCIAL SECURITY
Important information regarding Insurance and Social Security.
CONNECT WITH US ON SOCIAL MEDIA
Interact with members of the EB Community including families and supporters.
debra of America is actively involved in the international community. We can refer those outside of the United States to DEBRA International organizations in their respective countries.
INFORMACIÓN EN ESPANOL
Recibir información sobre EB en Español.
WEBSITE & E-NEWSLETTER
Provides current information on EB resources to patients, caregivers, and health professionals. Also, shares family stories, news articles, supporter led events, ways to get involved, and debra of America merchandise.
Return to "Family Center"
The Nurse Educator Program
Contact debra of America
What is EB?
Read Questions Previously Asked to the EB Nurse Educator