Epidermolysis Bullosa (EB) News

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

Announcements and Press Releases

 

THE ATLANTIC (WWW)
A Dying Boy Gets a New, Gene-Corrected Skin
November 8, 2017


MIT TECHNOLOGY REVIEW (WWW)
Gene-Therapy Grafts Have Repaired a Child’s Devastating Skin Disorder
November 8, 2017


NEW YORK POST (WWW)
This little girl’s skin is so fragile that even hugging hurts
November 8, 2017


THE NEW YORK TIMES (WWW)
Gene Therapy Creates Replacement Skin to Save a Dying Boy
November 8, 2017


REGULATORY AFFAIRS PROFESSIONALS SOCIETY (WWW)
GOP Tax Reform Bill Would Repeal Orphan Drug Research Credits
November 2, 2017


NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)
NORD Issues Statement in Response to Proposed Repeal of the Orphan Drug Tax Credit (ODTC)
November 2, 2017


EPIDERMOLYSIS BULLOSA NEWS (WWW)
BERG Receives Partners in Progress Award for Efforts in Treating Epidermolysis Bullosa
November 2, 2017


VINDY.COM (WWW)
Benefit at Lanai Lounge in memory of area man with rare disorder
September 29, 2017


PR NEWSWIRE (WWW)
Castle Creek Pharmaceuticals Announces First IGA Scale for Epidermolysis Bullosa Simplex Clinical Research
September 27, 2017


FIBROCELL SCIENCE (WWW)
Fibrocell Reports Interim Results of Phase 1/2 Clinical Trial of FCX-007 Gene Therapy for Recessive Dystrophic Epidermolysis Bullosa
September 26, 2017


AMICUS THERAPEUTICS (WWW)
Amicus Therapeutics Announces Top-Line Phase 3 Results for SD-101 in Epidermolysis Bullosa
September 13, 2017


GLOBE NEWSWIRE (WWW)
Abeona Therapeutics Receives FDA Breakthrough Therapy Designation for EB-101 Autologous Cell Therapy in Epidermolysis Bullosa
August 29, 2017


RARE DISEASE REPORT (WWW)
Promising Topical Treatment Options for Epidermolysis Bullosa Simplex Patients
August 22, 2017


ABEONA THERAPEUTICS (WWW)
Abeona Therapeutics Receives Guidance from FDA to Commence Pivotal Phase 3 for EB-101 Gene Therapy for Patients with Epidermolysis Bullosa
July 17, 2017


STAR TRIBUNE (WWW)
U team discovers ‘powerhouse’ new treatment in fight against deadly skin disease
June 27, 2017


YOUTUBE (WWW)
The confidence to turn empathy into action | Emily Milan Rea | TEDxLondon
June 22, 2017


WRGB CBS 6 NEWS, ALBANY (WWW)
Glens Falls man plans to pedal 8,000 miles to raise money, awareness of EB
June 24, 2017


DRUG DISCOVERY & DEVELOPMENT (WWW)
Developing a Gene Therapy with Transformative Potential for Patients with Recessive Dystrophic Epidermolysis Bullosa
June 19, 2017


MEDICAL UNIVERSITY OF SOUTH CAROLINA (WWW)
‘Butterfly child’ gets help from specialist with experience in treating her rare skin condition
June 14, 2017


PR NEWSWIRE (WWW)
Castle Creek Pharmaceuticals Announces First Patient Enrolled in DELIVERS Study of Diacerein 1% Ointment for Epidermolysis Bullosa Simplex
June 5, 2017


AMICUS RX (WWW)
Amicus Therapeutics Receives Rare Pediatric Disease Designation for SD-101 for Patients with Epidermolysis Bullosa
May 31, 2017


THE WASHINGTON POST (WWW)
Butterfly babies
May 30, 2017


ABEONA THERAPEUTICS (WWW)
Abeona Therapeutics Receives Rare Pediatric Disease Designation for EB-11 Gene Therapy Product for Patients with Epidermolysis Bullosa
May 30, 2017


RARE DISEASE REPORT (WWW)
Pharma – Advocacy Partnerships: How the BERG – debra partnership helps EB patients
May 29, 2017


ABEONA THERAPEUTICS (WWW)
Abeona Therapeutics Receives FDA Orphan Drug Designation for EB-101 Gene Therapy Product for Patients with Epidermolysis Bullosa– Abeona Therapeutics
May 25, 2017


PR NEWSWIRE (WWW)
BERG Announces New Partnership with debra of America to Tackle Epidermolysis Bullosa – a Rare Genetic Tissue Disorder
May 15, 2017


FIBROCELL (WWW)
Fibrocell Announces Data Safety Monitoring Board Recommends Continuation of Phase 1/2 Clinical Trial of FCX-007 for Treatment of Recessive Dystrophic Epidermolysis Bullosa
May 8, 2017


THE COLUMBIA DAILY TRIBUNE (WWW)
Butterfly child: Son’s rare illness helps Centralia family appreciate life
May 7, 2017


THE DOCTORS TV (WWW)
Little Boy Blisters When He’s Touched Due to Rare Disorder
May 4, 2017


NASDAQ (WWW)
Abeona Therapeutics Provides Update on EB-101 Gene Therapy for Severe Form of Epidermolysis Bullosa from the Society for Investigative Dermatology Conference
May 2, 2017


LONDON SOUTH EAST (WWW)
Amryt Pharma Enrols First Patient In Epidermolysis Bullosa Trial – Alliance News, London South East
April 24, 2017


WS TALE (WWW)
Los Angeles Woman with Epidermolysis Bullosa Survives
April 6, 2017


AMICUS RX (WWW)
Amicus Therapeutics Completes Enrollment in ESSENCE Phase 3 Epidermolysis Bullosa Clinical Study
April 3, 2017


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


 


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