Jack’s first memory of Jonah, my son with epidermolysis bullosa (EB), was at Jonah’s first birthday bash in 2010. It was a party to rival all parties, complete with carnival games, a petting zoo, and a three-decker cake. We didn’t think Jonah would make it to his first birthday,…

A new registry for those with epidermolysis bullosa (EB) and their families, from the patient advocacy organization debra of America, is aiming to help both them and scientists to better understand this group of rare skin disorders. The ultimate goal, according to the nonprofit, is to develop new…

From sharing stories to spreading the word about epidermolysis bullosa (EB) in person and on social media, supporters are poised to mark National Epidermolysis Bullosa Awareness Week, which runs annually in the U.S. from Oct. 25–31. According to the Dystrophic Epidermolysis Bullosa Research Association of America — coined as…

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…

With the new school year launching, the Dystrophic Epidermolysis Bullosa Research Association of America — better known as debra of America — is aiming to facilitate conversation and collaboration between families of children with epidermolysis bullosa (EB) and their teachers and classmates. To that end, debra is providing…

People of all ages with epidermolysis bullosa (EB) are invited to have their “mini wishes” — for things from iPads to concert tickets to birthday parties — granted by the Smile Fund Program. The Smile Fund program, created by the Dystrophic Epidermolysis Bullosa Research Association of America, known as…

With its lead therapy candidate AGLE-103 set to begin clinical testing in the coming months, Aegle Therapeutics is being honored with a Partners in Progress Award by the Dystrophic Epidermolysis Bullosa Research Association of America (Debra of America). Aegle is among three companies being recognized for its efforts to…

Debra of America (Dystrophic Epidermolysis Bullosa Research Association of America) and the Pachyonychia Congenita Project (PC Project) will soon meet with federal regulators to discuss patient-focused drug development in both rare skin diseases: epidermolysis bullosa (EB) and pachyonychia congenita (PC). PC is a rare genetic skin disorder caused by…

The biopharmaceutical company BERG was honored with a Partners in Progress Award from the Dystrophic Epidermolysis Bullosa Research Association of America (debra of America). The award recognized BERG’s efforts in developing new therapeutic strategies for epidermolysis bullosa (EB). “We’re honored to be recognized by debra…