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Debra of America - Dystrophic Epidermolysis Bullosa Research Association

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We Fight Epidermolysis Bullosa, the Worst Disease You've Never Heard Of.
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ATTEND AN EVENT

Register Now: 3rd Annual
EB at TPC Golf Classic
May 20, 2019

3rd Annual debra  EB at TPC Golf Classic

The 3rd annual EB at TPC Golf Classic will be held on Monday, May 20, 2019! Join Co-Chairs, NFL legends Kevin Butler and Brian Finneran, at award-winning course, TPC Sugarloaf, in Duluth, Georgia, which is home to the Mitsubishi Electric Classic held in April. The course has been completely redone and it will be in tournament shape just in time for our event!

Each foursome will play with a former or current NFL, MLB, or NBA player. A full list of celebrities will be announced soon! Join us for a day of golf, prizes, and refreshments! Details and registration.

 

Join TEAM DEBRA in Events Across the Nation in 2019

TEAM DEBRA at NYC Half

TEAM DEBRA is for marathon runners, cyclists, and everything in-between. What unites TEAM DEBRA is our commitment to spread EB awareness and raise funds to find a cure and treatment for EB. Click here to learn more about TEAM DEBRA and to see the events we are partnered with.

 

Save the Date!
21st debra of America Benefit
October 21, 2019

21st Annual debra of America Benefit

We are thrilled to announce that the 21st Annual debra of America Benefit will be held on Monday, October 21, 2019 at Tribeca 360° -- a premier event venue with 360 degrees of uninterrupted and breathtaking views of Manhattan. More details to come!

 
GET INVOLVED

Announcing the first-ever Adult-Only EB and
Skin Cancer Clinic
Philadelphia, PA

Adult-Only EB and Skin Cancer Clinic

 

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debra Blog

 

Active Clinical Trials

Krystal Biotech’s Topical KB103 Gene Therapy

Fibrocell Science Phase I/II Study of FCX-007 for Recessive Dystrophic EB

University of Miami and Berg Health’s Phase I Clinical Trial

 

Castle Creek Phase 2 Study of Diacerein 1% Ointment for  EBS

 

Castle Creek Pharmaceuticals’ Phase 1 PK Study of Diacerein 1% Ointment for EB

 

ProQR Therapeutics WINGS research study of QR-313 for RDEB

 

Amryt Pharma's EASE Study of AP101: Phase III Study Currently Enrolling DEB & JEB Patients

 

Children's Hospital of Philadelphia

 
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Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder in which children do not produce a vital protein to allow their skin to adhere to itself. 1 out of every 20,000 births in the United States are affected by the disease. Children with EB are often referred to as "Butterfly Children" because their skin is extremely fragile and can blister or tear from any friction. Internal organs can also be seriously affected by the disease. EB is painful, often debilitating, and is in some cases lethal. There is no treatment or cure. Daily wound care, pain management, and protective bandaging are the only options available. Click to learn more.

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© Copyright 2019, Debra of America (Dystrophic Epidermolysis Bullosa Research Association of America), All Rights Reserved    |   Debra of America is a registered 501(c)(3) tax exempt organization.   |   All Trademarks and Brands are Property of Their Respective Owners.   Debra does not endorse any drugs, tests, or treatments that we may report.
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