Local 'Butterfly Syndrome' survivor works to aid those with rare genetic disorder

Shane DiGiovanna was born with epidermolysis bullosa, or EB, a condition he said is described as "the worst disease you’ve ...
Forbes

Breakthrough Gene Therapy For Butterfly Children’s Disease

A revolutionary treatment brings new hope to those suffering from a devastating rare skin disorder, while showcasing an innovative funding model that could transform rare disease research In a ...
Distractify on MSN

Pearl Jam's Eddie Vedder deeply involved in philanthropy — including for epidermolysis bullosa

Eddie Vedder's connection to epidermolysis bullosa runs through his wife, Jill Vedder.
Local 12 WKRC Cincinnati

Pedals for EB: Local man biking 500 miles to raise awareness of rare skin disease

Cincinnati Zoo is expecting a big baby in the coming months The Cincinnati Zoo announced a baby is on the way, but this baby won't make it in time for Zoo Babies in May. Former Tri-State teacher ...
FiercePharma

After Amryt buyout, Chiesi scores with FDA nod for rare skin disease treatment Filsuvez

Seven months after Krystal Biotech became the first company to gain FDA approval to treat the rare, devastating skin disease epidermolysis bullosa (EB), Chiesi Farmaceutici has followed suit. On ...
Yahoo

Star-Studded Rock4EB! Concert Raises Over $1 Million for 'Butterfly' Skin Disease Epidermolysis Bullosa

ROCK4EB! with YOU AND ME (PINK + DALLAS GREEN), JIM JEFFERIES, BILLY HARRIS, AND JUDD APATOW AT EBMRF BENEFIT. This year’s star-studded Rock4EB! concert for epidermolysis bullosa was a success. On ...