EB RESEARCH PARTNERSHIP TOWN HALL: APRIL 2025 скачать в хорошем качестве

EB RESEARCH PARTNERSHIP TOWN HALL: APRIL 2025

This month’s Town Hall, hosted by Allison McGettigan, Director of Programs at EBRP, has a focus on Epidermolysis Bullosa Simplex and the EBShield Study, the Phase 2/3 Trial that's currently evaluating the efficacy and safety of diacerein for the treatment of severe and intermediate EB Simplex. ​ Our speakers: Nisha Trivedi Nisha is a passionate advocate for the rare disease community, drawing from her personal journey with EB Simplex. Her advocacy work includes sharing her story with members of Congress to promote policies benefiting rare disease patients, serving on EveryLife Foundation’s Community Congress and the Rare Disease Legislative Advocates Advisory Committee. Yiumo Michael Chan, Ph.D. Dr. Chan is currently serving as a Senior Consultant for TWi Biotechnology, a clinical stage biopharmaceutical company specializing in the development of novel treatments for rare skin diseases. Dr. Chan discovered the genetic basis of EBS-Weber Cockayne subtype during his graduate study in the University of Chicago. He has since demonstrated a successful track record in rare disease research and has led multiple preclinical and clinical programs in the US and Taiwan. He is also serving as a scientific advisor in several patient advocacy groups. Dr. Johann W. Bauer Dr. Bauer is Professor and Chair of the Department of Dermatology at the University Hospital Salzburg, and Director of the EB House Austria—the national reference center for epidermolysis bullosa (EB) in Austria. He has a long-standing career in molecular diagnosis, clinical management, and research on skin biology / blistering diseases, skin aging, and neurobiology of the skin http://www.ebresearch.org