Welcome to the Dystrophic Epidermolysis Bullosa Research Association of America

This Web site is your entry point to the only national non-profit organization dedicated to both promoting research to find new treatments and a cure for Epidermolysis Bullosa and providing information and support for people with EB and their families. Click here to learn more...

Great Gift New Grads!
Order the New Kindle and Support DebRA

Kindle 2 is Amazon's New Wireless Reading Device (Latest Generation).

Purchase the Kindle 2 by clicking here and you will help DebRA!

Easy Workplace Giving

DebRA of America is now a member of America's Charities which makes it easy and convenient to make a donation to DebRA. It is as simple as writing in our CFC number 11990 when you make your pledge at work.
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EB Kids can now Make-A-Wish. Learn more »

Make a difference! Click here to nominate DEBRA for a chance at winning a $25,000 Social Media Makeover!

The New Mrs. Ohio International

Lindsey Gregg, DebRA Volunteer wins
Mrs. Ohio International and promotes
EB awareness.

Click here to learn more.

DebRA Bracelets

Show everyone you support DebRA and raise awareness about EB by wearing the I SUPPORT DEBRA bracelet.

Click here to place your online order. Thank you for your support!

On February 20, 2009, a Symposium was held at Columbia University to bring together experts from around the world to discuss the clinical challenges of EB, and to present their latest work on therapies for EB. Learn more »

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Chile Symposium – December 2008

Thanks to Hollister Wound Care for their generous support of DebRA's first time attendance and for providing supplies. We also thank Byram Healthcare and National Rehab for their donations of wound care supplies.

DebRA Chile serves 160 EB "Ninos piel de cristal" – Crystal Skin Children – providing medical services at their new EB House, and wound care supply distribution nationwide to impoverished rural communities. This year's Symposium focused on hand surgery – techniques, occupational therapy, anesthesia, and pain management strategies. We felt very fortunate to be able to participate and learn.

Please click here for photos »

The Hollister EB Healing Award is funded by Hollister Woundcare and is given yearly to two families that have previously received Family Crises Fund support but who still need additional financial assistance.

The first recipient is the mother of a 1 year old daughter with Junctional EB; they live in Pennsylvania. The mother frequently travels to and from Cincinnati Children's Hospital as her daughter has been in and out of the hospital. The family has incurred travel and lodging expenses as well as many medical expenses not covered by their insurance.

The second award was presented to a single father from Brooklyn, New York. When his daughter was born with Recessive Dystrophic EB, the stress took a toll on his family and his wife left them. He presently has no health insurance, so taking care of his daughter who is now 16 years old is not only an emotional ordeal but a financial one as well.

Current Research Trials

Stem Cell Transplantation in Epidermolysis Bullosa
Recessive Dystrophic Epidermolysis Bullosa patients being recruited. More »

Chemotherapy/Donor Stem Cell Transplant in Treating Young Patients With EB at High Risk of Developing Squamous Cell Skin Cancer This study is currently recuriting participants. More »

EB Wound Healing Drug Studies Underway
The Children's Memorial Hospital Division of Dermatology is seeking subjects for a research study to test the effectiveness of a topical treatment, Alwextin® Cream, for Epidermolysis Bullosa (EB). More »

JEB and Dystrophic EB (Epidermolysis Bullosa) Patients Being Recruited. More »

RegeneRx is pleased to announce the addition of another study site. Dr. Eichenfield of Rady Children's Hospital in San Diego is now recruiting study patients. More »

RDEB Gene Transfer Trial Screening Open
Stanford University in California is currently looking for patients to participate in a preliminary screening. More »

DebRA is excited to announce its affiliation with the first DEB Career Development Award dedicated to finding a treatment and cure for DEB.

Please click here to learn more about the award and to contribute to the Jackson Gabriel Silver Fund which supports this and other EB research, as well as EB patient care initiatives.

Funding provided by a generous gift from the Grossmann/Silver Family.

PCC Conference DVD Available Now

DebRA of America's 2008 Patient Care Conference was filmed by National Rehab in collaboration with DebRA. National Rehab is a specialist in advanced wound care supplies and service. National Rehab has had a long standing commitment to the EB community.

If you would like to receive a copy of DebRA's 2008 Conference DVD, please click here »