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

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

Medical marijuana expansion clears Georgia House
Legislation expanding Georgia's two-year-old medical marijuana law cleared the state House of Representatives Wednesday. House lawmakers voted 156-6 to add eight medical conditions to the list qualifying Georgia patients to use cannabis oil, including Tourette's syndrome, autism spectrum disorder, epidermolysis bullosa, Alzheimer's disease, human immunodeficiency virus, acquired immune deficiency syndrome, autoimmun e disease and peripheral neuropathy. Patients with eight illnesses – including… (Source: bizjournals.com Health Care:Physician Practices headlines)
Source: bizjournals.com Health Care:Physician Practices headlines - March 1, 2017 Category: American Health Authors: Dave Williams Source Type: news

[Perspective] Fibroblasts become fat to reduce scarring
Following cutaneous injury in adult mammals, one of two outcomes can occur: successful healing with scar formation or nonsuccessful healing and a chronic wound. In humans, scar formation can be classified in terms of “normal scar” formation versus pathologically increased fibrosis, as seen in hypertrophic scarring and keloids (1). Although scarring does not look or function like surrounding unwounded skin, it allows one to survive injury (and hence, procreate). However, extensive scarring from burns and conditions such as scleroderma or epidermolysis bulosa are not only unsightly but also contribute to substantial morb...
Source: ScienceNOW - February 16, 2017 Category: Science Authors: Charles K. F. Chan Tags: Tissue Regeneration Source Type: news

Fibrocell Announces Leadership Changes
John Maslowski Succeeds David Pernock as Chief Executive Officer Douglas Swirsky Appointed Chairman of the Board of Directors EXTON, Pa., Dec. 19, 2016 -- (Healthcare Sales & Marketing Network) -- Fibrocell Science, Inc. (FCSC) today announced that J... Biopharmaceuticals, Personnel Fibrocell Science, epidermolysis bullosa (Source: HSMN NewsFeed)
Source: HSMN NewsFeed - December 19, 2016 Category: Pharmaceuticals Source Type: news

Bolton boy with incurable skin condition relies on wheelchair
Rhys Williams, from Bolton, Greater Manchester, was diagnosed at birth with recessive dystrophic epidermolysis bullosa - an incurable genetic condition. (Source: the Mail online | Health)
Source: the Mail online | Health - November 23, 2016 Category: Consumer Health News Source Type: news

Santa Fe student suffering from rare skin condition upbeat despite online abuse
Lucy Beall Lott, 17, from Santa Fe, was diagnosed with recessive dystrophic epidermolysis bullosa when she was born. The condition causes her skin to shed and painful blisters to form. (Source: the Mail online | Health)
Source: the Mail online | Health - October 7, 2016 Category: Consumer Health News Source Type: news

Agony of young mother whose daughter has rare skin blistering condition
Danni Latham, 21, from Walsall, West Midlanfds, was devastated when midwives explained her daughter Isla had no skin on her hands or feet thanks to a rare condition called Epidermolysis bullosa. (Source: the Mail online | Health)
Source: the Mail online | Health - August 15, 2016 Category: Consumer Health News Source Type: news

Fibrocell to begin Phase I/II trial of FCX-007 to treat RDEB
The US Food and Drug Administration (FDA) has given approval for Fibrocell Science to start a Phase I/II clinical trial of its orphan gene-therapy product candidate, FCX-007, to treat recessive dystrophic epidermolysis bullosa (RDEB) in adults. (Source: Drug Development Technology)
Source: Drug Development Technology - April 18, 2016 Category: Pharmaceuticals Source Type: news

Mystery of the 13 people with 'superhero DNA'
Conclusion The researchers have presented some intriguing results, but their inability to contact the individuals identified in the study puts the results in question. As well as the explanation the researchers put forward, it's possible that the results are simply due to mistakes in the records. The researchers hoped to be able to identify conditions (genetic or environmental) which might protect an individual from a disease such as cystic fibrosis, which they are genetically programmed to develop. However, the current study does not even confirm that such individuals exist, never mind help us to understand possible cause...
Source: NHS News Feed - April 12, 2016 Category: Consumer Health News Tags: Genetics/stem cells Medical practice Source Type: news

Topical allantoin cream speeds wound healing in epidermolysis bullosa
WASHINGTON – A 6% allantoin cream has shown good results in healing wounds caused by epidermolysis bullosa (EB), with 82% of patients getting a complete closure by 2 months, in a phase IIb study. The results of the 3 month study were good enough to propel that dose into both an open label and a... (Source: Skin and Allergy News)
Source: Skin and Allergy News - April 4, 2016 Category: Dermatology Source Type: news

Highgate boy is covered head to toe in bandages because of rare skin condition
Luke Ridehalgh, two, (pictured with his mother) from north London has recessive dystrophic epidermolysis bullosa (RDEB) a life-shortening condition which was diagnosed at birth. (Source: the Mail online | Health)
Source: the Mail online | Health - March 27, 2016 Category: Consumer Health News Source Type: news

Investigational Cream Promising for Epidermolysis BullosaInvestigational Cream Promising for Epidermolysis Bullosa
The concentrated form of an old ingredient -- allantoin, a diureide of glyoxylic acid -- has shown benefit in people with the rare condition of epidermolysis bullosa in a phase 2b study. Medscape Medical News (Source: Medscape Medical News Headlines)
Source: Medscape Medical News Headlines - March 8, 2016 Category: Consumer Health News Tags: Dermatology News Source Type: news

Management of CSCC in Patients With Epidermolysis BullosaManagement of CSCC in Patients With Epidermolysis Bullosa
Epidermolysis bullosa is often associated with the development of cutaneous squamous cell carcinoma, which can be fatal in these patients. How is it best diagnosed and managed? The British Journal of Dermatology (Source: Medscape Pathology Headlines)
Source: Medscape Pathology Headlines - February 17, 2016 Category: Pathology Tags: Dermatology Journal Article Source Type: news