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 9, 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 Post: 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