Epidermolysis Bullosa (EB) News

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

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 19, 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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