Tag: epidermolysis bullosa
Trials of new gene therapy cure ‘butterfly children’ of open wounds that had not healed for years
An experimental treatment created by researchers at Stanford University uses an engineered herpes virus to start production of the missing collagen VII protein, which stops the epidermis and dermis from separating … A gene therapy applied directly to the skin has cured nine patients who were suffering from a rare disease that causes blistering, wounding and scarring as a result of even the lightest contact. Some lesions can remain open for years without closing … read more
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Organizations Join Forces to Boost Wound Healing Care and Research
HMP Global’s Symposium on Advanced Wound Care (SAWC) Fall has established partnerships with the Wound Healing Foundation and debra of America to boost their research and improve care of patients with chronic wounds, such as those with epidermolysis bullosa (EB).
The SAWC Fall is scheduled to take place as an in-person meeting Oct. 29–31 in Las Vegas. For every registration, a donation will be made to each organization, according to HMP Global’s press release. To register, go here.
Established in 1999, the Wound Healing Foundation is a nonprofit dedicated to boosting scientific research and care of wound healing patients by funding research and promoting education and outreach.
debra of America works to improve the quality life of people with EB. Launched in 1980 to fill the gaps in knowledge about EB, the organization offers free services to U.S.-based EB patients and their families, and funds innovative research ultimately aimed at finding a cure for the disease … read more
EB Affects All Aspects of Daily Life, Patients Say in Interview Study
Ways to improve the quality of life for people with epidermolysis bullosa (EB) are needed, as those living with the disorder report a range of psychological and social impacts … In a series of interviews, a group of children and young adults with EB described their disease as significantly affecting daily life and interactions at school, within the family, and in society at large … Findings are detailed in the study “Psychosocial impact of epidermolysis bullosa on patients: A qualitative study,” published in the journal Pediatric Dermatology … read more