Durham-based Sciodermis launching today a Phase 3 clinical trial of a drug it hopes will be the first treatment for EB, “the worst disease you’ve never heard of.” The rare skin disorder is also known for creating “butterfly children” who are adorned with bandages in an attempt to fight the disease.

Scioderm closed on $20 million in new venture capital in December. The influx of cash is designated in large part for the clinical trial.

The Food and Drug Administration two years ago labeled the Scioderm drug Zorblisa as a “breakthrough therapy.”

EB stands for epidermolysis bullosa, which stems from cystic fibrosis.

Zorblisa is delivered topically,, and it has demonstrated effectiveness in an earlier trial. The treatment “was applied over the entire body area daily for three months. It was well-tolerated and resulted in complete closure of 88% of target chronic lesions within one month, in addition to a 57% reduction in body surface area coverage of blisters and lesions,” according to Scioderm.

In raising the B round of funding, which was led by new investor Redmile, CEO Robert Ryan noted: “With no approved therapy available, EB patients and their families experience prolonged and significant suffering. We are delighted to have successfully completed this financing round with world class investors and view the support of both our new and current investors as a strong endorsement of the team, our strategy and technology. We look forward to their support and insights as we continue developing Zorblisa as rapidly as possible for the patients and families suffering from this devastating disease.”

Scioderm landed $16 million in venture funding – primarily from Silicon Valley – just before the FDA designation for Zorblisa was announced.

EB is an inherited skin disease that affects as many as 30,000 cildren in the U.S. and 400,000 worldwide.

Scioderm notes EB creates skin frigility which leads to “massive skin blistering and tearing. These blisters often affect a substantial percentage of patients’ bodies that can lead to infection and scarring, and in its more severe forms can lead to deformities including fusion of the fingers and toes, secondary skin infections, sepsis and even death.”

For more about the disease, watch this YouTube documentary: https://www.youtube.com/watch?v=ZcvLDw37iD8