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...

Mats Wilander with Son Erik

On Monday, October 18, 2010, DebRA of America invites you to the 12th Annual Mats Wilander Celebrity Tennis and Golf Classic at the Westchester Country Club in Rye, NY.

DebRA, Sonya and Mats Wilander and Event Chair, Roger Stern look forward to another successful event that will benefit DebRA's program and services and help fund research for a cure of Epidermolysis Bullosa.

So, come for the golf and tennis and stay for great food and dancing. This year's event promises to be as good as the last! We look forward to seeing you there. Learn more »

To make your reservation, or help DebRA with a donation click here »

The ‘Minnesota’ bone-marrow transplantation clinical trial in people with RDEB: the early results

The long-awaited early results of the first clinical trial of bone-marrow transplant in children with recessive dystrophic epidermolysis bullosa (RDEB), carried out at the University of Minnesota in the USA, have now been published. This is the trial in which the young child Nate was the first to be treated, as well-publicized in the general press shortly after his treatment in October 2007. Nevertheless, it is still very early days following the transplantation treatment, and the full results with the long-term outcomes for these pioneering patients and their families may take a long time, possibly years, to become clear. Learn more »

Please Don't Come to Our Sixth Annual Butterfly Picnic

Because Life with EB is No Picnic

Instead, take a moment this summer to
consider the struggles people with EB face in the warmer months and throughout the year. Learn more »

Click here to make your gift online »

DebRA Faraone Mennella Butterfly Bracelet
in August Issue of Town and Country Magazine!!!

Beautiful sterling silver butterfly suspended on a delicate leather string bracelet designed by Faraone Mennella exclusively for DebRA of America.

Purchase the bracelet online »

Learn more »

Important EB News: DebRA Board Member testifies
in front of Senate Committee

DebRA Board of Trustees member Alex Silver testified in front of the SENATE COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS. The hearing was held in Washington, DC, on Wednesday July 21, 2010 and focused on treating rare diseases and promoting the development of treatments and cures.

EB was the only disease with a formal representative who was given the opportunity to speak about the disease and ways to promote the development of treatments and cures.

• The Senate Hearing
• Alex Silver's Written Comments
• ABC News Coverage: Video   Article

Social Security Announces 38 Additional Compassionate Allowance Conditions

February 11, 2010 - NORD Press Release: Michael J. Astrue, Commissioner of Social Security, announced that the agency is adding 38 more conditions to its list of Compassionate Allowances. "Junctional Epidermolysis Bullosa, Lethal Type" is one of the added conditions. Learn more »

Support DebRA:
Great Gift – New Low Price!
Order the New Global Edition Kindle

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

Purchase the Kindle Global Edition 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.
Learn more »

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 »

Learn more »

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 »

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 6 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.