On Rare Disease Day, a Focus on a Painful Skin Disease

(DGIwire) – To shed a spotlight on the more than 6,000 rare diseases, Rare Disease Day is marked worldwide on the last day of February each year—an event designed to raise awareness among the general public and decision-makers about these diseases and their impact on the lives of patients and their families. Starting in 2008 […]

Localized Scleroderma: What’s the Way Forward?

(DGIwire) – A large number of medical conditions have names rooted in Latin terms. One example is “scleroderma”— “sclero” means “hard” and “derma” means “skin.” But hardening skin is just one of many symptoms of localized scleroderma, a chronic autoimmune disease, which has no known cause and no cure. Stiff joints, digestive issues, lung scarring, […]

Butterfly Babies: The Youngest Victims of a Life-Threatening Skin Disorder

(DGIwire) – A newborn baby is a cause for joy. But for some parents, that joy is tempered by sadness—when the child is born with a rare disorder called epidermolysis bullosa (EB). As recently profiled in The Washington Post, the littlest victims of this disorder have bodies that are covered in blisters and wounds. Babies […]

Gene Therapy May Offer Potential Relief for Rare, Painful, Blistering Skin Disease

(DGIwire) — The term “butterfly children” sounds pleasant, but it refers to a harsh reality: children born with epidermolysis bullosa, or EB, an inherited, genetic blistering skin disorder that makes their skin as fragile as a butterfly’s wings. EB affects all races, ethnicities and both genders, and has no cure. According to the Dystrophic Epidermolysis […]

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