UNDERSTANDING EB ABOUT PROGRAMS & SERVICES FAMILY CENTER TAKE ACTION EVENTS DONATE Home • ABOUT • Announcements and Press Releases Announcements and Press Releases Press Contact: aigerim@debra.org Epidermolysis Bullosa (EB) News 19th Annual debra of America Benefit October 26, 2017 Guastavino's New York City, NY Learn more debra Inaugural EB at TPC November 13, 2017 Sugarloaf Golf Club Duluth, GA Learn more PAST ANNOUNCEMENTS 18th Annual debra of America Benefit October 24, 2016 Gotham Hall New York City Learn More 2016 Spirit Award The award will be presented at the debra of America Benefit on October 24, 2016. Learn more 2016 debra Care Conference July 24 - 28, 2016 Gaylord Texan Resort & Convention Center Dallas, Texas Learn More debra of America highlighted in Congressional Record – July 15, 2016 Read remarks by Representatives Joe Crowley of New York and G.K. Butterfield of North Carolina, highlighting debra of America and advocating for The Rare Pediatric Disease Priority Review Voucher Program renewal. Learn more Virginia Delegate Chris Peace Recognizes debra of America - February 17, 2016 State Lawmaker leads passage of a House Resolution commending debra of America for its service to the rare disease community. Press Release 2015 Spirit Award The award will be presented at the debra of America Benefit on November 16, 2015. Learn more The 17th Annual debra of America Benefit November 16, 2015 Sponsor Donate Press Release National Epidermolysis Bullosa (EB) Awareness Week Annually October 25-31 Press Release (2015) The 3rd Annual Mats Wilander Foundation & debra of America Tennis Pro-Am - September 2, 2015 The West Side Tennis Club, Forest Hills, NY Sponsor Donate The 16th Annual debra of America Benefit October 22, 2014 Sponsor Donate Press Release The 2nd Annual Mats Wilander Foundation & debra of America Tennis Pro-Am August 27, 2014 The West Side Tennis Club Forest Hills, NY Learn more Press Release 2014 Patient Care Conference - July 30 - August 2, 2014 Gaylord Opryland Resort & Convention Center Nashville, Tennessee Learn more Press Release "TEAM DEBRA" in The 2013 ING NYC Marathon November 3, 2013 Join "TEAM DEBRA" National Epidermolysis Bullosa (EB) Awareness Week Annually October 25-31 Press Release (2012) The 15th Annual debra of America Benefit MoMA | The Museum of Modern Art October 24, 2013 Sponsor Donate Press Release The Inaugral Mats Wilander Foundation & debra of America 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 "TEAM DEBRA" Runs For The First Time In The 2012 ING NYC Marathon – November 4, 2012 debra of America'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! 2012 Patient Care Conference – July 30-August 1, 2012 Read More Press Release debra of America Launches The Smile Fund Program – June 2012 Nominate Someone With EB For The Smile Fund Lilly Pulitzer Shop & Share Event – May 10, 2012 Read More Lifestyle + Charity press coverage Apply For The New debra of America Capital One® Platinum Visa® Credit Card – April 2012 By using this card, debra of America 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. Apply Here Patient Reported EB Registry – February 2012 debra of America launches the first patient reported EB registry. Register Now Press Release debra of America's 13th Annual Mats Wilander Celebrity Tennis & Golf Classic presented by Mölnlycke Health Care – October 17, 2011 Proceeds benefited EB research for a cure and our supportive programs. Thank you to our supporters and sponsors for a successful benefit. Read More debra of America Announces The Contest Winner – August 2011 debra of America is pleased to announce the winner of the Depict eb Relate Artistically contest! Read More $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). Read More 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 of America 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 debra of America 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 of America. Visit the WOW Store 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. Read More debra of America Board Member Testifies In Front Of Senate Committee – July 2010 debra of America 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. Read More 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. Read More Go Back Return to Home Related Information/Links Read about EB in Greater Depth Epidermolysis Bullosa (EB) News Attend an Event Understanding EB ABOUT LEARN MORE STAY UPDATED 75 Broad Street, Suite 300 New York, NY 10004 About debra of America Contact Us Privacy Policy What is EB Take Action Programs & Services New Families Events © Copyright 2018, Debra of America (Dystrophic Epidermolysis Bullosa Research Association of America), All Rights Reserved | Debra of America is a registered 501(c)(3) tax exempt organization. | All Trademarks and Brands are Property of Their Respective Owners. Debra does not endorse any drugs, tests, or treatments that we may report. This website is for informational purposes, always check with your physician before adopting any medical treatment.