News
What my realistic self-care plan looks like in a busy season of life
1+ year, 2+ week ago (45+ words) As an EB mom, graduate student, and full-time employee, columnist Patrice Williams says she doesn't always have time for a self-care plan....
We can do hard things, but never alone
3+ day, 9+ hour ago (565+ words) I couldn't have earned my master's degree without my family's support Written by Patrice Williams | May 22, 2026 This degree wasn't just mine. It was earned by all of us. From left, Gideon, Matt, Patrice, and Jonah Williams celebrate Patrice's grad school…...
Vyjuvek wins UK approval for DEB patients with COL7 A1 mutations
2+ day, 10+ hour ago (445+ words) Patients can self-administer gene therapy gel at home Written by Marisa Wexler, MS | May 22, 2026 The approval from the U. K. s Medicines and Healthcare products Regulatory Agency (MHRA) covers the use of Vyjuvek from birth onward, according to a company press release....
The unexpected purpose and perspective of EB motherhood
1+ week, 4+ day ago (823+ words) Our lives may look different than expected, but there's still joy and love Written by Elizabeth Hoffman | May 18, 2026 Like many of you, I recently celebrated Mother's Day with my two munchkins. We had a nice, relaxing day, and I even…...
Study highlights social barriers EB patients face in school, at work
1+ week, 2+ day ago (820+ words) Flexible arrangements, support from patient organizations can make life better Written by Steve Bryson, Ph D | May 15, 2026 Family support, understanding educators and colleagues, flexible work arrangements, and patient organizations emerged as the most meaningful facilitators of social participation in the…...
Expanding partnership aims to advance stem cell therapy for RDEB
2+ week, 2+ day ago (757+ words) Inmune working with UK charity to develop CORDStrom for wound healing Written by Michela Luciano, Ph D | May 8, 2026 Inmune Bio is expanding its partnership with the U. K. -based charity Anthony Nolan to advance an investigational stem cell therapy " dubbed CORDStrom " that's…...
FDA update allows at-home gene therapy for all DEB patients
8+ mon, 5+ day ago (23+ words) The FDA approved an update to the prescribing information of gene therapy Vyjuvek expanding access to all patients and allowing at-home use....
Learning how to cope with EB and anxiety while growing up
3+ week, 6+ day ago (483+ words) Guest writer Leslie Morris shares what his life was like as a child with EB. One of the challenges was learning how to cope with anxiety....
Children's Hospital Colorado set to provide Zevaskyn for RDEB
7+ mon, 2+ week ago (16+ words) Children's Hospital Colorado has become a qualified treatment center for Zevaskyn for recessive dystrophic epidermolysis bullosa....
In new deal, pharma company gets DEB gene therapy developer
3+ week, 2+ day ago (550+ words) With Replay platform, Leo Pharma will advance topical gel for rare genetic disease Written by Margarida Maia, Ph D | May 1, 2026 In a new deal, Denmark-based Leo Pharma is acquiring'Replay " and its "next-generation gene therapy platform" " with an eye toward developing…...