DebRA’s 2012 Patient Care Conference - Countdown to a Cure

Join us at the Gaylord Palms Resort in Orlando, Florida, July 30 through August 1, 2012.

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13th Annual Mats Wilander Celebrity Tennis & Golf Classic

Monday, October 17, 2011
Proceeds benefitted EB Research for a cure and our supportive programs.

Thank you to our supporters and sponsors for an incredible event.

Event photos and more

DebRA Announces the Contest Winner

DebRA is pleased to announce the winner of the Depict eb Relate Artistically contest!

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$26 million to fund DEB Research

Lotus Tissue Repair, Inc. announced a $26 million financing to develop the recombinant collagen type VII technology of Dr. David Woodley and Dr. Mei Chen (University of Southern California) as protein replacement therapy for Dystrophic Epidermolysis Bullosa (DEB).

Visit www.lotustissuerepair.com for more information

Shire Acquires Advanced BioHealing

June 28, 2011 - Shire PLC acquired Advanced BioHealing, which makes Dermagraft bio-engineered skin patches in San Diego, for $750 million. As part of Shire's Specialty Pharmaceuticals business the company will "leverage biologic manufacturing expertise from Shire's Human Genetic Therapies business. Kevin Rakin, Chief Executive Officer of Advanced BioHealing, will continue to lead this business within the Shire organization." This organization is planning a clinical trial for EB.

Research Funding Announcement

Intercytex and Debra announce the start of a Phase II trial with the Intercytex therapy ICX-RHY to treat skin erosions in patients suffering from the severe Recessive Dystrophic Epidermolysis Bullosa (RDEB).

Read the full press release

EB Awareness T-Shirt Sale

For her senior capstone project, Michelle Navarre, who also has EB, is promoting EB Awareness by selling t-shirts which she has designed. All profits from the t-shirt sale will go to Debra.

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Happy Hour Fundraiser for EB

February 11, 2011, The Hill, 3rd Avenue, New York, NY

Thanks for coming out Last Friday night to support the EB Happy Hour Fundraiser at the Hill. See you at the next one!

Debra Partners with Wilander on Wheels (WOW)

WOW is co-founded by tennis legend Mats Wilander and his business partner Cameron Lickle. 50% of the proceeds from the sale of Signed Memorabilia in the WOW store will be donated to Debra.

Visit the WOW store

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. 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.

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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.

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Social Security Announces 38 Additional Compassionate Allowance Conditions

Social Security Commissioner Michael Astrue announced this morning the expansion of Social Security's "Compassionate Allowances" program, which provides expedited review of disability applications from people with severely disabling conditions. The announcement was made in a NORD press release.

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