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...

2010 Patient Care Conference
We're going to Cincinnati...June 16-June 19

DebRA's 2010 Patient Care Conference is taking place from Wednesday, June 16 - Saturday, June 19. The conference and all related activities will be held at the Hyatt Regency Cincinnati, 151 West Fifth Street. It is going to be a great PCC with excellent speakers, interesting topics, meeting up with old friends and making new ones.
Learn more & make your Reservation »

Make a Difference this Valentine's Day

This Valentine's Day give a gift of hope by making a special contribution to DebRA in honor of your loved ones. Your gift is a wonderful tribute to those you love and enables DebRA to continue its mission of finding a cure, while providing medical, emotional and financial support to families living with EB. Learn more »

Click here to make your gift online »

Great Gift – New Low Price!
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!

The Hollister EB Healing Award is funded by Hollister Woundcare and is given yearly to a family that has previously received Family Crisis Fund support but who still needs additional financial assistance.

This year's award went to a family of five from Pennsylvania. The husband, one son and one daughter have EB. The Mother and one son are EB free. Since the Mom has so many responsibilities taking care of the family she can only work part time, although her husband is currently looking for work. They live 2½ hours from the nearest hospital that can treat their complications from EB when they arise, they do have health insurance but supplies that are not covered and their co pays alone are staggering.

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!

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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DebRA is currently looking for good high resolution photos of EB families for our new corporate brochure. If you have a great photo and are willing to participate, please email it to us at staff@debra.org.

EB Kids can now Make-A-Wish. Learn more »

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The Maryland Fraternal Order of Eagles Honor DebRA at Special Ceremony

The Maryland Fraternal Order of Eagles invited DebRA to its Mid-Atlantic Conference the weekend of November 7th, 2009. The Fraternal Order of Eagles upholds and nourishes the values of home, family and community. This year the Maryland Eagles "adopted" DebRA. With the support of Joe and Katie Murray and their beautiful Joella, The Eagles became aware of EB, and began to fundraise for the Murray's. The Murray family asked that the funds be shared with DebRA to support its activities in care, research towards a cure for EB. It was a glorious weekend and a proud day for the Eagles and for DebRA. We are grateful! Click for large photo »

Bracelet designed for DebRA

Beautiful sterling silver butterfly suspended on a delicate leather string bracelet designed by Faraone Mennella exclusively for DebRA of America. Delicate enough for a woman but still classic enough for a man. At only $30.00 it is a unique designer way to raise EB awareness and support DebRA. Click here for details »

Current Research Trials

Stem Cell Transplantation in Epidermolysis Bullosa
First FDA approved trial, to open end of November 2009 - Biochemical Correction of Severe Epidermolysis Bullosa by Allogeneic Stem Cell Transplantation. More »

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 »

ONLY 8 SLOTS REMAIN for JEB and Dystrophic EB wound study:
Patients with Junctional or Dystrophic EB are being sought for a wound healing study to test the safety and wound healing properties of Thymosin Beta 4 in EB wounds. More »

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

The Jackson Gabriel Silver Fund was established by the Silver and Grossmann family in 2008 in honor of their son Jackson. Jackson is a lively two-year old with Recessive Dystrophic EB. The Fund's mission is to sponsor and support (i) medical research that seeks breakthrough treatments and, ultimately, a cure for RDEB and all forms of EB and (ii) patient care initiatives at DebRA of America, such as the Family Crisis Fund and the Nurse Educator Program, that aid those who suffer from EB.

As of October 2009, the Jackson Gabriel Silver Fund had raised over $135,000. Jackson's parents, Jamie and Alex, believe "there is no better gift that we can give Jackson and other children living with EB than to do everything in our power to find a cure and to help those in need while we work hard to accomplish this goal."

You can contribute to the Jackson Gabriel Silver fund via this online link or by sending a check to DebRA of America and designating your contribution directly to the JGS Fund.

Dance Relief and Envision Environmental Support DebRA

Dance Relief has contributed at least $5,000.00 to worthy causes with each event, and this year along with Envision Environmental it raised about $9,000.00 for DebRA. This year's event was very special since one of the dancers, Alexandra Roman, has Epidermolysis Bullosa (EB). Although dancing at times is quite painful for Alex, her love for dance, along with the support of her dance family at Ocean Dance Force in NJ helps her realize her passion. Learn more »

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 »