DebRA Press Releases and Announcements

Press Contact: casey [at] debra [dot] org

Click Here For Epidermolysis Bullosa (EB) News


2015 Spirit Award Search
Nominate a person with EB for the 2015 Spirit Award!
Deadline August 31, 2015. Winner will be announced Sept 4, 2015.
Learn more

Debra of America logo

MW Foundation Tennis Pro-Am and debra logos

2016 Patient Care Conference
Gaylord Texan Resort & Convention Center
Dallas, Texas
July 24 - 28, 2016

Gaylord Texan Resort & Convention Center

Past Announcements

16th Annual Debra of America Benefit Mölnlycke Health Care logo B.B. King Blues Club logo

MW Foundation Tennis Pro-Am and Debra logos

2014 Patient Care Conference - July 30 - August 2, 2014
Gaylord Opryland Resort & Convention Center
Nashville, Tennessee
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Press Release

Gaylord Opryland Resort & Convention Center

2013 ING NYC Marathon

National Epidermolysis Bullosa (EB) Awareness Week Annually October 25-31

15th Annual Debra of America Benefit at the Musuem of Modern Art Mölnlycke Health Care logo Musuem of Modern Art logo

The Inaugral Mats Wilander Foundation Tennis Pro-Am
West Side Tennis Club - August 28, 2013

Proceeds benefitted EB Research for a cure and our supportive programs.

Thank you to our supporters and sponsors for a successful benefit!

Press Release

MW Foundation Tennis Pro-Am and Debra logos

"Team DebRA" Runs For The First Time In The
2012 ING NYC Marathon – November 4, 2012

2012 ING NYC Marathon

DebRA's 14th Annual Mats Wilander Tennis & Golf Benefit presented by Mölnlycke Health Care – October 1, 2012

Proceeds benefitted EB Research for a cure and our supportive programs.

Thank you to our supporters and sponsors for a successful benefit!

Mölnlycke Health Care logo 14th Annual Mats Wilander Tennis & Golf Benefit logo

Patient Care Conference 2012-Gaylord Palms Resort

Smile Fund

1st Annual DebRA & Lilly Pulitzer Shop & Share Event – May 10, 2012

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Lifestyle + Charity press coverage

Lilly Pullitzer Shop and Share Event

Apply For The New DebRA Capital One® Platinum Visa® Credit Card – April 2012

By using this card, DebRA receives: $50 after your first purchase, 2% donation on gas and grocery purchases, 1% donation on all other purchases, and up to 10% of purchases made at select merchants. This Visa Platinum credit card makes it easier than ever to support our cause.

DebRA of America gets a donation - and you get to spread the word about our cause - with every swipe!

Apply Here

Apply for the DebRA Credit Card

Patient Reported EB Registry – February 2012

DebRA launches the first patient reported EB registry.

Register Now

Press Release

EB Care logo

DebRA's 13th Annual Mats Wilander Celebrity Tennis & Golf Classic presented by Mölnlycke Health Care – October 17, 2011

Proceeds benefitted EB Research for a cure and our supportive programs.

Thank you to our supporters and sponsors for a successful benefit.

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Mölnlycke Health Care logo 13th Mats Wilander Celebrity Classic logo

DebRA Announces The Contest Winner – August 2011

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

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CCS Medical and DebRA sponsored contest

$26 million To Fund DEB Research – June 2011

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).

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Lotus Tissue Repair logo

Shire Acquires Advanced BioHealing – June 28, 2011

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


Research Funding Announcement – March 2011

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).

Press Release

Intercytex logo

EB Awareness T-Shirt Sale – February 2011

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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EB Awareness T-Shirt Sale

DebRA Partners With Wilander On Wheels (WOW) – October 2010

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

WOW co-founders Mats Wilander and Cameron Lickle

The ‘Minnesota’ Bone-Marrow Transplantation Clinical Trial In People With RDEB: The Early Results – August 2010

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. It is still very early 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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Minnesota bone-marrow transplantation clinical trial

DebRA Board Member Testifies In Front Of Senate Committee – July 2010

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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Alex Silver Testifying before Senate Committee on Health Education Labor and Pensions

Social Security Announces 38 Additional Compassionate Allowance Conditions – February 2010

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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NORD (National Organization for Rare Disorders) Logo

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