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

A common genetic signature has been discovered among three cancer prone rare skin diseases
(Universidad Carlos III de Madrid) A group of researchers lead by a lecturer from the Universidad Carlos III de Madrid (UC3M), Marcela del R í o, from the CIEMAT, the Rare Diseases Networking Biomedical Research Centre (Initials in Spanish: CIBERER-- ISCIII) and Fundaci ó n Jim é nez D í az has identified a common genetic signature among three rare skin diseases or genodermatoses: recessive dystrophic epidermolysis bullosa, Kindler syndrome and xeroderma pigmentosum. In the near future, these findings will allow efficient and safe evidence-based therapeutic approaches. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - March 4, 2019 Category: International Medicine & Public Health Source Type: news

Woman, 31, with agonising 'butterfly skin' only takes PARACETAMOL to combat her pain
Myra Ali, 31, of West Midlands, was born with fragile skin condition Dystrophic Epidermolysis Bullosa. She must dress her limbs with bandages for over an hour every morning. (Source: the Mail online | Health)
Source: the Mail online | Health - February 28, 2019 Category: Consumer Health News Source Type: news

Teenager, 19, suffers from rare skin condition
Ariana Covarrubias, 19, from Los Angeles, suffers from epidermolysis bullosa, which affects around one in 50,000 people across the world. (Source: the Mail online | Health)
Source: the Mail online | Health - January 24, 2019 Category: Consumer Health News Source Type: news

The boy with butterfly skin
To the astonishment of anyone who ’s ever heard of his disease - epidermolysis bullosa, or EB - Henry DeAngelis skis, drives, hangs out with friends independently, and is applying to college. (Source: the Mail online | Health)
Source: the Mail online | Health - December 27, 2018 Category: Consumer Health News Source Type: news

A hug could kill him - but this 15-year-old refuses to give in
John, 15, of Staten Island, was born with Epidermolysis bullosa, a condition that leaves him in constant pain and affects only one in every 50,000 children in the United States. (Source: the Mail online | Health)
Source: the Mail online | Health - November 20, 2018 Category: Consumer Health News Source Type: news

Epidermolysis Bullosa (EB)
Title: Epidermolysis Bullosa (EB)Category: Diseases and ConditionsCreated: 11/13/2015 12:00:00 AMLast Editorial Review: 10/22/2018 12:00:00 AM (Source: MedicineNet Skin General)
Source: MedicineNet Skin General - October 22, 2018 Category: Dermatology Source Type: news

Diagnostic Criteria for Epidermolysis Bullosa Acquisita Diagnostic Criteria for Epidermolysis Bullosa Acquisita
Review the findings of a recent consensus conference which established clinical and laboratory criteria defining the classification of and diagnostic testing for epidermolysis bullosa acquisita.The British Journal of Dermatology (Source: Medscape Today Headlines)
Source: Medscape Today Headlines - September 10, 2018 Category: Consumer Health News Tags: Dermatology Journal Article Source Type: news

Student who suffers a rare skin tearing condition stars in lingerie campaigns  
Lucy Beall-Lott, 19, of Fife, Scotland,, suffers from  dystrophic epidermolysis bullosa (RDEB) - meaning any friction can cause her skin to shred-off. (Source: the Mail online | Health)
Source: the Mail online | Health - August 3, 2018 Category: Consumer Health News Source Type: news

Tamarack ’s GlideWear helps kids with painful skin condition
Photo by Alison Bents Photography for Tamarack Habilitation Technologies, Inc. A company that makes ultra-low-friction fabric for people with burn injuries, amputations and pressure sores has launched a clothing line for children with a painful skin condition. Known as “butterfly children,” these patients have epidermolysis bullosa (EB), a rare genetic disorder in which their bodies do not produce a protein that would enable the skin to adhere to itself. Their extremely fragile skin blisters and tears from minor friction or trauma, making it seem as fragile as the wings of a butterfly. When officials with low-f...
Source: Mass Device - July 31, 2018 Category: Medical Devices Authors: Nancy Crotti Tags: Blog Pediatrics Wound Care Tamarack Habilitation Technologies Inc. University of Minnesota Source Type: news

Girl, 12, candidly shares her battle with incurable blistering disease
Destiny Fuentes, 12, from Las Vegas, Nevada, was diagnosed at birth with epidermolysis bullosa, a rare, genetic tissue order that causes her skin to blister and burst, leaving raw sores on her body. (Source: the Mail online | Health)
Source: the Mail online | Health - July 23, 2018 Category: Consumer Health News Source Type: news

Models with scars and skin conditions pose for Missguided
The fashion giant's new  #InYourOwnSkin campaign features models such as Londoner Maya Spencer-Berkeley, whose skin is so fragile it constantly blisters - due to Epidermolysis bullosa. (Source: the Mail online | Health)
Source: the Mail online | Health - May 11, 2018 Category: Consumer Health News Source Type: news

The butterfly woman who lives in constant agony
WARNING: GRAPHIC CONTENT Shardai Cousino, 24, from  Palm Bay, Florida, has Epidermolysis Bullosa, which causes her skin to blister and tear at the slightest touch. (Source: the Mail online | Health)
Source: the Mail online | Health - May 10, 2018 Category: Consumer Health News Source Type: news

Boy from Canada with painful blisters uses laughing gas to ease pain
Evan Prescott, eight, from Mercier in Quebec, Canada, uses laughing gas to deal with the pain from his rare skin disorder called epidermolysis bullosa, which causes his skin to blister. (Source: the Mail online | Health)
Source: the Mail online | Health - May 3, 2018 Category: Consumer Health News Source Type: news

Boy, 8, with skin condition that causes blisters uses laughing gas to ease pain
Evan Prescott, eight, from Mercier in Quebec, Canada, uses laughing gas to deal with the pain from his rare skin disorder called epidermolysis bullosa, which causes his skin to blister. (Source: the Mail online | Health)
Source: the Mail online | Health - May 3, 2018 Category: Consumer Health News Source Type: news

Krystal Biotech receives approval in Europe for gene therapy treatment
A gene therapy company has received a designation for one of its treatments from the European Medicines Agency. Krystal Biotech, developing and commercializing novel treatments for dermatological diseases, announced that KB103, a treatment for a severe skin disorder, was granted an Orphan Medicinal Product Designation by the agency, according to a news release. In November 2017, the FDA granted the same de signation for the treatment, which is meant for dystrophic epidermolysis bullosa, an incurable… (Source: bizjournals.com Health Care:Biotechnology headlines)
Source: bizjournals.com Health Care:Biotechnology headlines - April 19, 2018 Category: Biotechnology Authors: Stacey Federoff Source Type: news

Abeona Therapeutics Appoints Carsten Thiel, Ph.D., as Chief Executive Officer
Company strengthens management team with biopharmaceutical veteran bringing extensive commercial experience in life-threatening rare diseases Tim Miller, Ph.D. continues as president and assumes chief scientific officer role NEW YORK and CLEVELAND, A... Biopharmaceuticals, Personnel Abeona Therapeutics, gene therapy, epidermolysis bullosa, Sanfilippo syndrome (Source: HSMN NewsFeed)
Source: HSMN NewsFeed - April 2, 2018 Category: Pharmaceuticals Source Type: news

Queensland man with a severe skin condition defies doctors
Dean Clifford, from Queensland, has become the oldest living survivor in the world of the most serious form of Epidermolysis bullosa, which strikes one in 50,000 people. (Source: the Mail online | Health)
Source: the Mail online | Health - March 15, 2018 Category: Consumer Health News Source Type: news

Man, 38, with a severe skin condition defies doctors
Dean Clifford, from Queensland, has become the oldest living survivor in the world of the most serious form of Epidermolysis bullosa, which strikes one in 50,000 people. (Source: the Mail online | Health)
Source: the Mail online | Health - March 15, 2018 Category: Consumer Health News Source Type: news

Raquel Hultman has skin syndrome that tears at the slightest touch
Raquel Hultman, eight, was diagnosed with epidermolysis bullosa (EB) at birth, a rare genetic tissue disorder which has no cure, but she loves to ski in a thick padded jacket that protects her (Source: the Mail online | Health)
Source: the Mail online | Health - March 9, 2018 Category: Consumer Health News Source Type: news

Little girl has skin syndrome that tears at the slightest touch
Raquel Hultman, eight, was diagnosed with epidermolysis bullosa (EB) at birth, a rare genetic tissue disorder which has no cure, but she loves to ski in a thick padded jacket that protects her (Source: the Mail online | Health)
Source: the Mail online | Health - March 9, 2018 Category: Consumer Health News Source Type: news

'Butterfly disease' sufferer refuses life-saving treatment
WARNING: GRAPHIC CONTENT Jonathan Gionfriddo, 17, from Stafford Springs, Massachusetts, endures agonising pain every day due to epidermolysis bullosa. (Source: the Mail online | Health)
Source: the Mail online | Health - January 29, 2018 Category: Consumer Health News Source Type: news

Grow your own: the race to create body parts in the lab
From replacement skin to entire new organs, regenerative medicine is finally leaving its early scandals – and the controversial ‘earmouse’ – behind. Could it one day provide a cure for birth defects, blindness and diabetes?Two years ago, Hassan ’s father was faced with questions that he had no good answers for. “Why do I have this disease?” his seven-year-old son asked him. “Why do I have to live this life?”Hassan was born with a rare genetic skin condition, called epidermolysis bullosa, that causes fragile, blistering skin. His first blister appeared when he was a week...
Source: Guardian Unlimited Science - December 5, 2017 Category: Science Authors: Hannah Devlin Tags: Medical research Health Doctors Society Stem cells Diabetes Biology Science Source Type: news

Tia has epidermolysis bullosa - known as 'butterfly skin'
Four-year-old Tia is hoping for pioneering treatment for her fragile skin condition. (Source: BBC News | Health | UK Edition)
Source: BBC News | Health | UK Edition - November 16, 2017 Category: Consumer Health News Source Type: news

Stem Cell Gene Therapy Replaces Boy's Entire Epidermis Stem Cell Gene Therapy Replaces Boy's Entire Epidermis
Ex vivo gene therapy of epidermal cells from a boy with junctional epidermolysis bullosa enabled grafts to completely replace his epidermis.Medscape Medical News (Source: Medscape Medical News Headlines)
Source: Medscape Medical News Headlines - November 9, 2017 Category: Consumer Health News Tags: Dermatology News Source Type: news

'Butterfly' boy saved after doctors create him a new skin
WARNING, GRAPHIC CONTENT: The unnamed boy, who suffered from junctional epidermolysis bullosa, was treated by doctors at Bochum University Hospital in Germany. (Source: the Mail online | Health)
Source: the Mail online | Health - November 8, 2017 Category: Consumer Health News Source Type: news

Genetically Altered Skin Saves A Boy Dying Of A Rare Disease
An inherited disease called epidermolysis bullosa destroyed the 7-year-old's skin. Scientists grew new skin in the lab without the genetic flaw, and replaced 80 percent of his skin. He is thriving.(Image credit: CMR Unimore/Nature ) (Source: NPR Health and Science)
Source: NPR Health and Science - November 8, 2017 Category: Consumer Health News Authors: Richard Harris Source Type: news

Gene Therapy Creates Replacement Skin to Save a Dying Boy
Doctors grew sheets of healthy skin that were transplanted onto a boy with a genetic disease that caused blistering and tearing all over his body. (Source: NYT Health)
Source: NYT Health - November 8, 2017 Category: Consumer Health News Authors: DENISE GRADY Tags: Skin Epidermolysis Bullosa Genetic Engineering Nature (Journal) Source Type: news

Gene Therapy Creates New Skin to Save a Dying Child
Doctors grew sheets of healthy skin that were transplanted onto a boy with a genetic disease that caused blistering and tearing all over his body. (Source: NYT Health)
Source: NYT Health - November 8, 2017 Category: Consumer Health News Authors: DENISE GRADY Tags: Skin Epidermolysis Bullosa Genetic Engineering Nature (Journal) Source Type: news

Genetically modified skin grown from stem cells saved a 7-year-old boy ’ s life
Scientists reported Wednesday that they genetically modified stem cells to grow skin that they successfully grafted over nearly all of a child's body — a remarkable achievement that could revolutionize treatment of burn victims and people with skin diseases. The research, published in the journal Nature, involved a 7-year-old  boy who suffers from a genetic disease known as junctional epidermolysis […]Related:She signed up to be a surrogate mother — and unwittingly gave away her own childWhite House opioid commission calls for wide-ranging changes to anti-drug policiesScream...
Source: Washington Post: To Your Health - November 8, 2017 Category: Consumer Health News Source Type: news

Medical News Today: How gene therapy saved a little boy's life
Epidermolysis bullosa gives rise to painful blisters and chronic wounds. Doctors were sure that one little boy was going to lose his life — but he didn't. (Source: Health News from Medical News Today)
Source: Health News from Medical News Today - November 8, 2017 Category: Consumer Health News Tags: Dermatology Source Type: news

Boy is given new skin thanks to gene therapy
(Ruhr-University Bochum) A medical team at the Ruhr-Universit ä t Bochum's burn unit and the Center for Regenerative Medicine at the University of Modena (Italy) were the first ever to successfully treat a child suffering from extensive skin damage using transplants derived from genetically modified stem cells. The boy is a so-called butterfly child: he suffers from epidermolysis bullosa, a genetic skin disease that had destroyed approximately 80 percent of his epidermis. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - November 8, 2017 Category: International Medicine & Public Health Source Type: news

Mother slams Facebook after photo of toddler is banned
WARNING GRAPHIC CONTENT: Rhiannon Atkinson, 30, tried to advertise pictures of Pippa's blistered feet to raise awareness of epidermolysis bullosa on Facebook. (Source: the Mail online | Health)
Source: the Mail online | Health - October 3, 2017 Category: Consumer Health News Source Type: news

Girl with EB blisters at the slightest touch
WARNING GRAPHIC CONTENT: Rhiannon Atkinson, 30, from South Wales, was told her daughter, Pippa, one, had epidermolysis bullosa. Her skin blisters and tears at just the slightest touch. (Source: the Mail online | Health)
Source: the Mail online | Health - September 22, 2017 Category: Consumer Health News Source Type: news

Girl, 1, blisters at the slightest touch
WARNING GRAPHIC CONTENT: Rhiannon Atkinson, 30, from South Wales, was told her daughter, Pippa, one, had epidermolysis bullosa. Her skin blisters and tears at just the slightest touch. (Source: the Mail online | Health)
Source: the Mail online | Health - September 22, 2017 Category: Consumer Health News Source Type: news

Pennsylvania boy is born with 'butterfly skin' disease
Lennon Gregory, who lives in Masontown, Pennsylvania, was diagnosed with epidermolysis bullosa (EB) just 26 hours after he was born. (Source: the Mail online | Health)
Source: the Mail online | Health - August 10, 2017 Category: Consumer Health News Source Type: news

Skin condition has turned woman's hands into mittens
Myra Ali, 29, from Solihull, West Midland, suffers from a genetic complaint known as epidermolysis bullosa – also called the 'butterfly condition' – where skin is so delicate it tears constantly. (Source: the Mail online | Health)
Source: the Mail online | Health - August 9, 2017 Category: Consumer Health News Source Type: news

Epidermolysis Bullosa teenager lives with painful blisters
Khewjira Phanij, from central Thailand,  was born with epidermolysis bullosa (EB) - an incurable condition. The disease causes the 16-year-old's skin to blister and tear at the slightest touch. (Source: the Mail online | Health)
Source: the Mail online | Health - July 6, 2017 Category: Consumer Health News Source Type: news

Gene finding to eradicate severe blistering disorder of the skin found in dogs
(University of Helsinki) Researchers at the University of Helsinki have identified a novel gene defect that causes a hereditary blistering disorder of the skin, epidermolysis bullosa, in dogs. Epidermolysis bullosa, found in the Central Asian Shepherd dog breed, occurs also in humans due to an identical gene found in both canines and humans. (Source: EurekAlert! - Social and Behavioral Science)
Source: EurekAlert! - Social and Behavioral Science - June 1, 2017 Category: International Medicine & Public Health Source Type: news

11-month-boy suffers from epidermolysis bullosa
Jamie White, from Staffordshire, was born with epidermolysis bullosa (EB) - an incurable condition. It causes his skin to tear at the slightest touch. (Source: the Mail online | Health)
Source: the Mail online | Health - May 26, 2017 Category: Consumer Health News Source Type: news

Meet the 'butterfly' baby
Jamie White, from Staffordshire, was born with epidermolysis bullosa (EB) - an incurable condition. It causes his skin to tear at the slightest touch. (Source: the Mail online | Health)
Source: the Mail online | Health - May 26, 2017 Category: Consumer Health News Source Type: news

Exton firm advancing drug candidate to help 'butterfly children'
Fibrocell Science Inc., a Chester County gene and cell therapy company, is making progress on its experimental treatment to help “butterfly children.” The Exton company’s lead drug candidate, FCX-007, is being developed to treat a condition known as recessive dystrophic epidermolysis bullosa (RDEB). The rare skin disease afflicts an estimated 1,100 to 2,500 people, mostly children, nationwide. The condition prevents t he layers of skin from forming properly. As a result, pediatric patients… (Source: bizjournals.com Health Care:Physician Practices headlines)
Source: bizjournals.com Health Care:Physician Practices headlines - May 23, 2017 Category: American Health Authors: John George Source Type: news

Epidermolysis bullosa sufferer, 4, can't be hugged
Jasmine Ritchie has epidermolysis bullosa which makes her skin so delicate that the slightest touch can make it tear. Mother Anna, from Gloucestershire, said: 'She ’s not giving up, so neither will we' (Source: the Mail online | Health)
Source: the Mail online | Health - May 22, 2017 Category: Consumer Health News Source Type: news

Gov. Deal signs medical marijuana expansion
Legislation Gov. Nathan Deal signed Tuesday will add six illnesses to the list of medical conditions that qualify for treatment in Georgia with a form of medical marijuana. Senate Bill 16 expands access to cannabis oil to Georgians suffering from Tourette's syndrome; autism spectral disorder in the case of adults and severe autism in children; epidermolysis bullosa; severe or end stage Alzheimer's disease, AIDS or peripheral neuropathy; and hospice patients who have been authorized by their physicians… (Source: bizjournals.com Health Care:Biotechnology headlines)
Source: bizjournals.com Health Care:Biotechnology headlines - May 9, 2017 Category: Biotechnology Authors: Dave Williams Source Type: news

Gov. Deal signs medical marijuana expansion
Legislation Gov. Nathan Deal signed Tuesday will add six illnesses to the list of medical conditions that qualify for treatment in Georgia with a form of medical marijuana. Senate Bill 16 expands access to cannabis oil to Georgians suffering from Tourette's syndrome; autism spectral disorder in the case of adults and severe autism in children; epidermolysis bullosa; severe or end stage Alzheimer's disease, AIDS or peripheral neuropathy; and hospice patients who have been authorized by their physicians… (Source: bizjournals.com Health Care:Physician Practices headlines)
Source: bizjournals.com Health Care:Physician Practices headlines - May 9, 2017 Category: American Health Authors: Dave Williams Source Type: news

Los Angeles woman with Epidermolysis Bullosa survives
Vanessa Leinert, 30, from Los Angeles, wasn't expected to make it past the age of three as a rare skin condition causes her skin to fall off every time she walks, gets dressed or even uses her hands. (Source: the Mail online | Health)
Source: the Mail online | Health - April 6, 2017 Category: Consumer Health News Source Type: news

Guest Contributor: Debra of America on Epidermolysis Bullosa
Conversations and healthy debate about issues facing our industry and the health care system are critical to addressing some of today ’s challenges and opportunities. The Catalyst welcomes guest contributors, including patients, stakeholders, innovators and others, to share their perspectives and point of view. Views represented here may not be those of PhRMA, though they are no less key to a healthy dialogue on issues in health care today.We are pleased to host a Q&A with Brett Kopelan, executive director for Debra of America. (Source: The Catalyst)
Source: The Catalyst - March 3, 2017 Category: Pharmaceuticals Authors: Guest Contributor Tags: Rare Diseases Source Type: news