My 'butterfly skin' could kill me but I want to raise awareness for others
Epidermolysis bullosa is a rare genetic condition where skin can tear at the slightest touch. (Source: BBC News | Health | UK Edition)
Source: BBC News | Health | UK Edition - January 18, 2020 Category: Consumer Health News Source Type: news

Woman, 32, was expected to DIE as a newborn from a rare condition that causes pus-filled blisters
Assya Shabir, from Birmingham, was diagnosed with junctional epidermolysis bullosa at birth. Her skin and internal organs are so fragile they constantly blister. (Source: the Mail online | Health)
Source: the Mail online | Health - January 3, 2020 Category: Consumer Health News Source Type: news

Boy abandoned at the hospital after being born with 'butterfly skin' disease diagnosed with cancer 
Charlie Knuth, 13, from Darboy, Wisconsin, was diagnosed with a rare skin disorder called epidermolysis bullosa, which causes his skin to blister. He is now battling lymphoma. (Source: the Mail online | Health)
Source: the Mail online | Health - December 18, 2019 Category: Consumer Health News Source Type: news

FDA removes hold on pivotal gene therapy trial
Abeona Therapeutics announced that the U.S. FDA has removed its clinical hold on the company ’s pivotal Phase 3 clinical trial evaluating gene therapy for the treatment of recessive dystrophic epidermolysis bullosa (RDEB). (Source: PharmaManufacturing.com)
Source: PharmaManufacturing.com - December 9, 2019 Category: Pharmaceuticals Source Type: news

AVITA Medical and Gates Center for Regenerative Medicine at CU Anschutz to collaborate
(University of Colorado Anschutz Medical Campus) AVITA Medical, a regenerative medicine company with a technology platform positioned to address unmet medical needs in therapeutic skin restoration, and scientists at the Gates Center for Regenerative Medicine at the University of Colorado School of Medicine announced today a preclinical research collaboration to establish proof-of-concept and explore further development of a spray-on treatment of genetically modified cells for patients with epidermolysis bullosa (EB), with potential applicability to other genetic skin disorders. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - November 25, 2019 Category: International Medicine & Public Health Source Type: news

FDA places hold on Abeona late-stage study
Abeona Therapeutics announced that the FDA has placed a clinical hold on its planned Phase 3 clinical trial evaluating autologous cell therapy EB-101 in patients with recessive dystrophic epidermolysis bullosa. (Source: PharmaManufacturing.com)
Source: PharmaManufacturing.com - September 23, 2019 Category: Pharmaceuticals Source Type: news

Boy with skin-peeling condition sent 18,000 cards
Rhys has epidermolysis bullosa, a painful, life-limiting condition that has left him unable to walk. (Source: BBC News | Health | UK Edition)
Source: BBC News | Health | UK Edition - September 19, 2019 Category: Consumer Health News Source Type: news

Boy, five, with 'butterfly skin' suffers 'third-degree burns every time he bumps his skin'
Jamie Cockeram, five, from Worcester, was diagnosed with recessive epidermolysis dystrophic bullosa when he was born. The pain means he often relies on a wheelchair to get about. (Source: the Mail online | Health)
Source: the Mail online | Health - September 3, 2019 Category: Consumer Health News Source Type: news

Topical Diacerein Ointment for Epidermolysis Bullosa Simplex Topical Diacerein Ointment for Epidermolysis Bullosa Simplex
Diacerein ointment, an investigational rhein prodrug for the treatment of epidermolysis bullosa, was granted FDA Rare Pediatric Disease and Fast Track development designation in 2018.Skin Therapy Letter (Source: Medscape Today Headlines)
Source: Medscape Today Headlines - July 12, 2019 Category: Consumer Health News Tags: Dermatology Journal Article Source Type: news

Epidermolysis Bullosa: Developing Drugs for Treatment of Cutaneous Manifestations; Guidance for Industry
Clinical / Medical (Source: FDA Center for Drug Evaluation and Research - What's New)
Source: FDA Center for Drug Evaluation and Research - What's New - June 28, 2019 Category: Drugs & Pharmacology Authors: FDA Source Type: news

Girl, nine, has such fragile skin that the lightest graze leaves her with 'burns'
WARNING, GRAPHIC CONTENT: Phoebe Crowson, of Peterborough, has had her childhood 'robbed' by the condition epidermolysis bullosa, diagnosed at birth. (Source: the Mail online | Health)
Source: the Mail online | Health - June 18, 2019 Category: Consumer Health News Source Type: news

Mother was accused of BURNING her sons after a rare condition left them with 'butterfly skin' 
Melissa Jaquez, 38, of Wichita, Kansas, is mother to three sons, two of which suffer from the genetic condition severe recessive dystrophic epidermolysis bullosa. (Source: the Mail online | Health)
Source: the Mail online | Health - June 10, 2019 Category: Consumer Health News Source Type: news

A baby was born with nearly no skin. Doctors are fighting to keep him alive.
Doctors believe Ja’bari Gray was born with a rare genetic condition called epidermolysis bullosa that makes his skin appear translucent, or even non-existent. (Source: Washington Post: To Your Health)
Source: Washington Post: To Your Health - April 19, 2019 Category: Consumer Health News Authors: Lindsey Bever Source Type: news

Gene editing for recessive dystrophic epidermolysis bullosa
(Universidad Carlos III de Madrid) A group of researchers from the Biomedical Research Networking Centre on Rare Diseases (CIBERER), Universidad Carlos III de Madrid (UC3M), the Research Center for Energy, Environmental and Technology (CIEMAT), and the Instituto de Investigaci ó n Sanitaria Fundaci ó n Jim é nez D í az (IIS-FJD) have led a study which demonstrates the viability of a gene editing strategy for recessive dystrophic epidermolysis bullosa (also known as butterfly chilidren) with the tool CRISPR/Cas9 in preclinical models with this disease. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - April 8, 2019 Category: International Medicine & Public Health Source Type: news

Potential treatment for cancer in butterfly disease
(Thomas Jefferson University) New research lays foundation for upcoming clinical trial for patients with epidermolysis bullosa. (Source: EurekAlert! - Cancer)
Source: EurekAlert! - Cancer - March 7, 2019 Category: Cancer & Oncology Source Type: news