Epidermolysis Bullosa (EB) News - 2017
OTTAWA CITIZEN (WWW)
Jonathan Pitre, mother discussing with doctors possible return home
December 22, 2017
U.S. FOOD & DRUG ADMINISTRATION (WWW)
FDA approves novel gene therapy to treat patients with a rare form of inherited vision loss
December 19, 2017
EPIDERMOLYSIS BULLOSA NEWS (WWW)
2 Gene Mutations Identified as Possible Cause of EBS in One Patient, Researchers Say
December 5, 2017
INSIDE DENTISTRY
First, Do No Harm
November 2017
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
POPSTYLE TV (WWW)
Fighting for a Cure: debra of America’s 19th Annual Benefit
November 6, 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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