Epidermolysis Bullosa (EB) News - 2012

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NEWBURYPORT DAILY NEWS (WWW)
Port Odd Fellows Support Ailing Haverhill Teen
December 28, 2012


SYRACUSE.COM (WWW)
Top 10 News Stories of 2012 in Syracuse and Central New York
December 26, 2012


HOME REPORTER AND SUNSET NEWS (BROOKLYN, NY)
Brave Little “Butterfly Child”
December 26, 2012


THE TOMAHAWK (MOUNTAIN CITY, TENNESSEE)
Rare Skin Disorder Does Not Stop This Little Fighter
December 12, 2012


NEWHOUSE (WWW) 
Beyond her skin: 11-year-old Girls Does Not Let Disease Define Her
December 3, 2012


WISC-TV (MADISON, WI)
Sun Prairie Boy With Rare Disease Gets Breakthrough Treatment
November 23, 2012


EB RESOURCE (WWW)
Q&A with an EB Advocate: Jamie Silver of Jackson Gabriel Silver Foundation, Part I
November 6, 2012


CNBC (WWW)
New York City Marathon Canceled, Bloomberg Says
November 2, 2012


BLESSED BY BRENNA (WWW)
EB: "the worst disease you've never heard of"
October 24, 2012


THE DRUM (WWW)
Charity DEBRA unveils ‘peel here’ app with Publicis London to highlight pain of those who suffer from Epidermolysis Bullosa
October 23, 2012


LARCHMONT-MAMARONECK PATCH (WWW)
Larchmont Man to Run ING Marathon to Raise Money For Rare Skin Disease
October 22, 2012


EB RESOURCE (WWW)
Tweeting to Support EB Families
October 16, 2012


WINK NEWS (FORT MYERS, FL)
Arcadia boy with rare disease celebrates first birthday
October 11, 2012


CHEVY CHASE PATCH (WWW)
Chevy Chase Man to Run ING New York City Marathon Nov. 4 to Raise Money and Awareness for Rare Genetic Disease
October 9, 2012


WNYT-TV (ALBANY, NY)
Wheels for a special 11-year-old
September 20, 2012


THE SALT LAKE CITY TRIBUNE (SALT LAKE CITY, UT)
Rare Disease Spurs Utah County Woman To Be Democratic Activist
September 2, 2012


CINCINNATI CHILDREN’S BLOG (CINCINNATI, OH)
Exploring New Frontiers
August 31, 2012


CAYUGA COUNTY NEWSPAPER (AUBURN, NY)
Saving Easton: Auburn Baby Born With Rare, Severe Skin Disease
August 29, 2012


SYRACUSE.COM (SYRACUSE, NY)
Community Rallies Around Cayuga County Family Whose Newborn Son Has Rare, Incurable Skin Condition
August 28, 2012


CASPER JOURNAL (CASPER, WY)
Worth Talking About - Generosity
August 27, 2012


WSYR 9 NEWS TV (AUBURN, NY) 
Family, Friends Rally For CNY Baby Born With Rare, Painful Skin Disorder
August 27, 2012


HUFFINGTON POST (WWW)
Campaign For Baby Brystal Suffering From EB, Incurable "Worst Disease You've Never Heard Of"
August 24, 2012


MAIL ONLINE (LONDON, ENGLAND)
A Cheeky Smile That Masks The Pain
August 21, 2012


PEOPLE MAGAZINE (WWW)
How Your Next Home Goods Purchase Can Help a Great Cause
August 13, 2012


ORLANDO SENTINEL (ORLANDO, FL)
Rare Skin Disorder Bonds Families At Osceola Conference
August 1, 2012


WKMG 6 NEWS TV (ORLANDO, FL)
Kids With Rare Skin Disease Search For Answers
July 31, 2012


WALL STREET JOURNAL: MARKET WATCH (WWW)
DebRA of America Holds 6th Biennial Patient Care Conference For Epidermolysis Bullosa Patients and Medical Experts From July 30 to August 1 in Orlando, Florida
July 26, 2012


FASHIONETC (WWW)
Merch Girl: The Story of Finding Beauty Through an Incurable Skin Disease
July 19, 2012


K2 RADIO (CASPER, WY)
Original Play Debuts In Casper
July 19, 2012


ALABAMA LIVE (WWW)
Those With Rare Genetic Skin Disorder Epidermolysis Bullosa Fight For Normalcy
June 21, 2012


LITTLE WARRIORS: A KINDERGARTEN BLOG (WWW)
Facebook, Pinterest And Awards
June 18, 2012


LIFESTYLE + CHARITY MAGAZINE (WWW)
Lilly Pulitzer Event For DebRA
May 23, 2012


WDSU 6 NEWS TV (NEW ORLEANS, LA)
Family Battles State Over Hospice Care Decision
May 22, 2012


WHAS 11 NEWS TV (LOUISVILLE, KY)
Louisville Mom Forms Advocacy Program After Losing Daughter To Rare Disease
May 16, 2012


THE CHRONICLE-TELEGRAM (WWW)
Couple Raising Awareness Of Rare Disease That Took Son’s Life
May 11, 2012


FOX 8 NEWS TV (KERNERSVILLE, NC)
Kernersville Boy Lives With Rare Skin Disorder
May 7, 2012


ABC 15 NEWS TV (PHOENIX, AZ)
Arizona Girl Fights Rare Skin Condition
April 9, 2012


ABC 7 EYEWITNESS NEWS TV (NEW YORK, NY)
Moms Run New York City Half-Marathon For A Special Cause
March 16, 2012


WHAS 11 NEWS TV (LOUISVILLE, KY)
Interview: Butterfly Benefit Fashion Show And Luncheon
March 15, 2012


NEW YORK PRESS (WWW)
Charity Race For 4-Year Old With Rare Disease
March 15, 2012


NY SENATE (WWW)
Memorializing Governor Andrew M. Cuomo To Proclaim March 11, 2012, As Epidermolysis Bullosa Awareness Day In The State Of New York
March 11, 2012


JEWISH STANDARD (NEW JERSEY)
A 'Butterfly' on Jerusalem Stone
March 9, 2012


BUSINESS WIRE
DebRA International and DebRA of America Launch EBCare.org, the International Patient Reported Registry for Epidermolysis Bullosa (EB)
February 29, 2012


REUTERS
DebRA International and DebRA of America Launch EBCare.org, the International Patient Reported Registry for Epidermolysis Bullosa (EB)
February 29, 2012


MY UPPER WEST SIDE (WWW)
UWS Fundraiser: “Rafi’s Run” To Benefit 4-Year-Old Upper West Sider Rafaella Lily Kopelan
February 27, 2012

 


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