Epidermolysis Bullosa (EB) News - 2013

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USA TODAY (WWW)
Girl with tough spirit, fragile skin sheds bandage cocoon
December 26, 2013


USA TODAY (WWW)
Girl with tough spirit, fragile skin sheds bandage cocoon
December 26, 2013


ABC-27 (WWW)
Scioderm, Inc. receives Positive Opinion from European Orphan Medicinal Products Committee for Novel Topical Therapy to Treat Epidermolysis Bullosa
December 17, 2013


TENNIS MAGAZINE (THE HEROES ISSUE)
Mats Wilander #5 "Finding a Cure"
November/December 2013


The Spokesman-Review (WWW)
Eight-year-old doesn’t let genetic disorder stop him
November 14, 2013


FoxNews.com (WWW)
'Butterfly children': The tragic condition that makes kids' skin blister, fall off
November 8, 2013


The Omak-Okanogan County Chronicle (WWW)
Brewster Volleyball Celebrates Senior Night
November 7, 2013


Daily Herald (WWW)
'Butterfly Child' Finds Strength To Live With Skin Disorder
November 3, 2013


THIBBINGMN (WWW)
Argir tackles her biggest challenge: Running in NYC Marathon for DEBRA
November 2, 2013


Post Crescent (WWW)
Medically Improved And Back In School, Charlie Knuth, 7, Is Living It Up
November 2, 2013


Dermstore (WWW)
Help Your Skin, Help Their Skin with Retrospect’s Initiative
November 1, 2013


University Hospitals MacDonald Women’s Hospital (WWW)
UH Fertility Center Gives New Hope to Couple Who Lost Their Son to Rare Genetic Disorder
November 2013


ABC NEWS – CHANNEL 9 (TV)
Baby Easton’s parents reflect during National EB Awareness week
October 30, 2013


PR Newswire (WWW)
Scioderm Honored with Partners in Progress Award from DEBRA of America
October 30, 2013


The Wall Street Journal (WWW)
Fibrocell Science Honored with Partner in Progress Award from DEBRA of America
October 25, 2013


The Business Journal (WWW)
Scioderm's CEO Dr. Robert Ryan Appointed Member of DebRA Board
October 21, 2013


Manasquan-Belmar Patch (WWW)
Be Part of the Cure for Epidermolysis Bullosa (EB) - East Coast Premier at Spring Lake Community House
October 6, 2013


World Travaillers (WWW)
The worst disease you’ve never heard of
September 16, 2013


Observer-Reporter Southwestern Pennsylvania (WWW)
Sisters Living With Blistering Skin Condition
September 14, 2013


Boston Magazine
The Cure
September 2013


Tennis Channel
Mats Wilander hosts the Inaugural MW Foundation Tennis Pro-Am benefiting Debra of America at West Side Tennis Club in Queens, New York
August 28, 2013


Fox Sports Primetime (Radio)
Former Tennis Great Mats Wilander Stops By Primetime To Talk About The State Of Tennis Today
August 20, 2013


ABC NEWS CHANNEL 9 (TV)
Family, Friends, Supporters Gather to Wish Baby Easton A Happy 1st Birthday
August 18, 2013


PR Newswire (WWW)
Tennis Legend Mats Wilander and debra of America Hold Tennis Pro-Am during 2013 US Open to Benefit Children with Rare Genetic Disorder
August 7, 2013


About.com (WWW)
Site of the Day: August 2013
August 5, 2013


The Post-Journal (WWW)
'Butterfly Bash' Raises $8,700
July 25, 2013


WINK News (TV)
Local Toddler Battles Rare Genetic Disease
July 24, 2013


The POST – University of Florida (WWW)
Unbreakable
June 19, 2013


SCIENCE CODEX (WWW)
U of M Researchers Find Novel Gene Correction Model For Epidermolysis Bullosa
June 6, 2013


JOURNAL OF PEDIATRIC DERMATOLOGY
Junctional Epidermolysis Bullosa Incidence and Survival: 5-Year Experience of the DebRA of America Nurse Educator
May 31, 2013


DETROIT FREE PRESS (WWW)
Westland Restaurant To Pay $50,000 For Denying Service To Family
May 8, 2013


AVON-AVON LAKE PATCH (WWW)
2nd 'Love For Lucas' Event Combats 'Worst Disease You've Never Heard Of'
May 2, 2013


Inside Edition (TV)
Young Girl Bravely Deals With Painful Skin Condition
March 14, 2013


New York Family (WWW)
Run for Rafi on Sunday March 10
March 1, 2013


Pura Vida Bracelets (WWW)
DebRA of America for Epidermolysis Bullosa Celebrates Rare Disease Day
February 25, 2013


Counsel & Heal (WWW)
Girl Inspires Fight For A Cure
February 24, 2013


CNN (WWW)
A Child’s Struggle Inspires Drive For A Cure
February 23, 2013


ABC NEWS (WWW)
People With 'Butterfly' Skin Condition Triumph Through Pain
February 22, 2013

"It's literally the worst disease you've never heard of," said Rafi's father, Brett Kopelan, who now runs the Dystrophic Epidermolysis Bullosa Research Association of America. "The simplest of things, like dental cleaning or brushing her teeth, is enough to rip the inside of her mouth open, yet this kid gets up and goes to school every day with a smile on her face. I don't know how she does it. I don't know how any of these kids do it." [via: abcnews.go.com]


USA TODAY (WWW)
Her Delicate Skin Belies A Tough Spirit
February 18, 2013


NEW YORK DAILY NEWS (NEW YORK, NY)
No Elevator, So Wheelchair-Bound Student Can't Attend S.I. School
February 14, 2013


CNY CENTRAL (WWW)
At Home With Baby Easton
January 31, 2013


YAHOO FINANCE (WWW)
The Avenger: Student Is Teacher's Inspiration for Gaming Controller
January 10, 2013


GENETIC ENGINEERING & BIOTECHNOLOGY NEWS (WWW)
Shire Acquires Lotus Tissue Repair
January 8, 2013


REUTERS (WWW)
Shire Acquires Lotus Tissue Repair, Inc.
January 8, 2013


BOSTON BUSINESS JOURNAL (BOSTON, MA)
Shire Snaps Up Third Rock Ventures-Backed Lotus Tissue Repair
January 8, 2013

 


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