Epidermolysis Bullosa (EB) News

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

Announcements and Press Releases

 

ABEONA THERAPEUTICS (WWW)
Abeona Therapeutics Receives Orphan Drug Designation in the European Union for EB-101 Gene Therapy Clinical Trial for Epidermolysis Bullosa
March 8, 2017


MORNING STAR (WWW)
Amryt Pharma Gets Go-Ahead For Phase 3 Trial of Skin Disorder Drug
March 6, 2017


PHRMA THE CATALYST (WWW)
Guest Post: debra of America on Epidermolysis Bullosa
March 3, 2017


STAFFORDSHIRE NEWSLETTER (WWW)
Nurse highlights Epidermolysis Bullosa – a condition which causes her baby’s skin to tear
February 28, 2017


ECONOTIMES (WWW)
Fibrocell Announces Dosing of First Patient in Phase I/II Clinical Trial of FCX-007 Gene Therapy for Treatment of Recessive Dystrophic Epidermolysis Bullosa
February 23, 2017


AMERICA’S CHARITIES (WWW)
The Worst Disease You’ve Never Heard Of
February 7, 2017


HEALTH AIM (WWW)
Epidermolysis Bullosa: Boy Grows Up In Danger Of Losing His Skin
February 6, 2017


GOOD HOUSEKEEPING (WWW)
My Son’s Skin Blisters When I Hug Him
February 1, 2017


MEDIA PLANET (WWW)
Research into Blisters Offers Hope for “Butterfly Children”
February 2017


ABC7 NEW YORK (WWW)
Donations providing new bath for teen with excruciating skin disorder in Staten Island
January 31, 2017


PR NEWSWIRE (WWW)
Tarix Orphan Receives Rare Pediatric Disease Designation for TXA127 for Recessive Dystrophic Epidermolysis Bullosa (RDEB)
January 18, 2017


NEW YORK FAMILY (WWW)
Good Cause: debra of America
January 17, 2017


PATIENTWORTHY (WWW)
How One Little EB Super Cutie is Changing Her World
January 11, 2017


RARE DISEASE REPORT (WWW)
Making Progress in Rare Diseases
January 9, 2017


FIBROCELL (WWW)
Fibrocell Announces FDA Fast Track Designation of FCX-007 for Treatment of Recessive Dystrophic Epidermolysis Bullosa
January 5, 2017


MIT TECHNOLOGY REVIEW (WWW)
Gene Therapy Offers Hope for “Worst Disease You’ve Never Heard Of”
December 21, 2016


CBS NEWS (WWW)
President Obama signs the 21st Century Cures Act
December 13, 2016


BBC NEWS (WWW)
Using my voice after two years of silence
December 14, 2016


NATURE (WWW)
CRISPR/Cas9-based genetic correction for recessive dystrophic epidermolysis bullosa
December 8, 2016


RARE DISEASE REPORT (WWW)
Senate Votes 94-4 in Favor of 21st Century Cures Act #curesnow
December 7, 2016


THE RICHMOND REGISTER (WWW)
Parents turn tragedy into help for others
December 5, 2016


YOUTUBE (WWW)
The Bravest Bulldog
December 2, 2016


FIERCE BIOTECH (WWW)
Amryt secures €20M to fund pivotal rare disease trial
December 2, 2016


THE MIGHTY (WWW)
This Is What an Invisible Disease Looks Like
November 15, 2016


ASBURY PARK PRESS (WWW)
Manasquan rallies around 9-year-old with rare disease
November 14, 2016


POPSTYLE TV (WWW)
Join debra of America and the Fight Against EB
November 3, 2016


YAHOO FINANCE (WWW)
Abeona Therapeutics Announces JAMA Publication of Positive Phase 1 Study Results for EB-101 Gene Therapy Clinical Trial for Epidermolysis Bullosa
November 2, 2016


STANFORD MEDICINE NEWS CENTER (WWW)
Gene therapy for blistering skin disease appears to enhance healing in clinical trial
November 1, 2016


THE SQUAMISH CHIEF (WWW)
All for baby Nash; Family thanks community for help after their son was born with rare, painful skin disease
October 27, 2016


DAILY MAIL (WWW)
Teenager whose fragile skin falls off at the slightest touch has spent his life wrapped in a cocoon of bandages to prevent a deadly infection
October 10, 2016


RARE DISEASE REPORT (WWW)
Topical Diacerein Showing Promise for Epidermolysis Bullosa
October 3, 2016


YOUTUBE (WWW)
The worst disease you never heard of…and why it matters to you | Jakub Tolar | TEDxFargo
September 28, 2016


MORNING CONSULT (WWW)
Spurring Drug Development for Life-Threatening, Rare Pediatric Conditions
September 22, 2016


GLOBE NEWSWIRE (WWW)
Fibrocell Completes Enrollment in NC1+ Cohort of Phase I/II Clinical Trial of FCX-007 for Treatment of Recessive Dystrophic Epidermolysis Bullosa

September 19, 2016


MARKETWIRE (WWW)
Abeona Therapeutics Enrolls 5th Patient in Phase 1/2 Gene Therapy Clinical Trial for Epidermolysis Bullosa
September 8, 2016


ABEONA THERAPEUTIC INC (WWW)
Abeona Therapeutics Enrolls 5th Patient in Phase 1/2 Gene Therapy Clinical Trial for Epidermolysis Bullosa
September 8, 2016


MONTHLY PRESCRIBING REFERENCE (WWW)
FDA Grants TXA127 Orphan Drug Status for Rare Genetic Skin Disorder
September 7, 2016


THE HUFFINGTON POST (WWW)
When A Child Who Was Supposed To Die Grows Up
August 25, 2016


ORPHANET JOURNAL OF RARE DISEASES
Inherited epidermolysis bullosa and squamous cell carcinoma: a systematic review of 117 cases
August 20, 2016


JOURNAL OF REHABILITATION MEDICINE
Leg amputation and dystrophic epidermolysis bullosa: A case report with 15 years of follow-up
August 18, 2016


OTTAWA SUN (WWW)
‘If I don’t do this, I’ll pass away…’ Jonathan Pitre on way to Minnesota for stem cell transplant
August 17, 2016


ASPIRE MAGAZINE
Members Making a Difference: Brian Raphael, MD
Summer 2016


GLOBE NEWSWIRE (WWW)
Fibrocell Announces First Subjects Enrolled in Phase I/II Clinical Trial of FCX-007 for Treatment of Recessive Dystrophic Epidermolysis Bullosa
July 27, 2016


BROOKLYN DAILY (WWW)
Do-gooders raise cash for sick Dyker teen
July 6, 2016


PR NEWSWIRE (WWW)
Tarix Orphan Announces Positive Results with TXA127 in Animal Model of Dystrophic Epidermolysis Bullosa (DEB)
June 27, 2016


WAYNE POST (WWW)
Assemblyman Bob Oaks to pass epidermolysis bullosa resolution
June 16, 2016


ALBANY TIMES UNION (WWW)
Glens Falls man plans 7,000-mile trip to raise awareness for EB
June 15, 2016


Ottawa Citizen (WWW)
Saving Jonathan Pitre: 'Butterfly Boy' heading to U.S. for therapy that could change his life
June 4, 2016


The Progress News | newjerseyhills.com (WWW)
Ten-year-old Raises Thousands for Friends
June 2, 2016


Science | AAAS (WWW)
The gene editor CRISPR won't fully fix sick people anytime soon. Here's why
May 3, 2016


CNYcentral.com (WWW)
Easton Friedel is getting ready for school
May 3, 2016


Fibrocell (WWW)
Fibrocell and Intrexon Announce Allowance to Commence Phase I/II Trial for FCX-007 for the Treatment of Recessive Dystrophic Epidermolysis Bullosa (RDEB)
April 18, 2016


The Rivertowns Enterprise (WWW)
8-year-old inspires six-figure fundraiser
March 11, 2016


News-Medical.Net (WWW)
Researchers reveal how butterfly disease patients develop cutaneous squamous cell carcinomas
March 11, 2016


CHRIS PEACE (WWW)
Virginia Delegate Chris Peace Recognizes debra of America February 17 2016
February 17, 2016


LEGISCAN (WWW)
Legislative Research: VA HR127 | 2016 | Regular Session
Virginia House Resolution 127

February 17, 2016


HUFFINGTON POST IMPACT (WWW)
Finding a Cure For a Life of Constant Pain
February 5, 2016


SOURCE CREATIVE (WWW)
The Worst Disease You've Never Heard Of...
February 2, 2016


THE DRUM (WWW)
Harrowing ads out of Havas Worldwide Tonic shine light on rare genetic disease
January 14, 2016


HAVAS WW (WWW)
Havas Worldwide Tonic for Debra of America: #ItWontHurtToWatch
January 13, 2016


GREENWICH FREE PRESS (WWW)
Art & Sound Draws a Crowd to Gallery Opening Featuring Paintings by Thomas Misisco
January 10, 2016


 


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