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...
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!
Cell Therapy Offers Hope for those
that Suffer from EB
Kindle 2 is Amazon's New Wireless Reading Device (Latest Generation).
Purchase the Kindle 2 by clicking here and you will help Debra!
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.
1st Annual Presentation of The Hollister EB Healing Award
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 »
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 »
The Jackson Gabriel Silver
Dystrophic Epidermolysis
Bullosa Career Development
Award
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.
Lawyers Alliance Honors Debra Board of Trustees
Vice-President Warren T. Buhle
On November 10, 2008, The Lawyers Alliance for New York honored Warren T. Buhle, Esq., Vice-President of Debra’s Board of Trustees, with their 2008 Cornerstone award in recognition of his work on behalf of Debra.
Lawyers Alliance is the leading provider of business and transactional legal services for nonprofit organizations that are improving the quality of life in low-income neighborhoods throughout New York City. 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 »
Did You Know?
Debras ·Wound Care Clearinghouse collects donated wound care supplies and distributes them free to Epidermolysis Bullosa patients in need. ·Family Crisis Fund provides emergency assistance ·Eric Lopez Fund offers an opportunity for people with Epidermolysis Bullosa to achieve a higher level of independence and/or improve the activities of daily living