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5/29/25 Town Hall: In our May Town hall, in honor of Mental Health Awareness Month, we focused on mental health and grief in the EB and Rare Disease space and were joined by Dr. Anne Davis, EB Mom, Advocate & licensed Clinical Psychologist, and Dr. Jamie Feinstein, Pediatric Director at Children's hospital Colorado EB Program.
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4/30/25 Town Hall: In our April Town Hall, hosted by Allison McGettigan, Director of Programs at EBRP, we 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. We heard from Nisha Trivedi, Dr. Yiumo Michael Chan, and Dr. Johann Bauer.
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3/25/2025 Town Hall: In our March Town Hall, hosted by Michael Hund, CEO of EBRP, we focused on Junctional Epidermolysis Bullosa, emerging therapies, and creative ways to rally your community. We heard from Jordan Eaves, EB Mom and Founder of Wessons Wish and Dr. Diana Reusch, Dr. David Woodley and Dr. Mei Chen, leading EB clinicians and researchers.
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2/25/2025 Town Hall: In our February Town Hall, hosted by Allison McGettigan, Director of Programs at EBRP, we heard from three speakers: Nathan Burmeister, EB Dad and EBRP Australia Chair, Dr. Allison Cowin, leading researcher in the Australian EB space, and Jason McCartney from the GWS Giants.
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1/30/2025 Town Hall: Our first Live Town Hall of 2025 was an enlightening discussion of the journey from bench to bedside care for EB, with three insightful points of view! Hosted by EBRP CEO Michael Hund, this Town Hall featured three incredible speakers: Kate Holler, Dr. Jamie Feinstein, and Dr. Ganna Bilousova.
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11/26/2024 Town Hall: The EBRP team is joined by Elizabeth Hoffman, mom to Demah and passionate EB advocate, and Victoria Prieto Filice, Project Manager and Outreach Lead at Eliksa Therapeutics, whose exciting work EBRP has proudly funded. We discuss the complications of Junctional EB, corneal abrasions, and emerging therapies in this space.
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10/25/24 Town Hall: This will be a public discussion led by Team EBRP along with Emily Kubik, Elodie's mom and EBRP Board Member, Kristan Khtikian, Plunge for Elodie Co-Chair & Co-Creator, and Annie and Patterson McKenzie, EB warriors and advocates. We'll be discussing how the Plunge has grown into an international movement, helps EB families rally their communities, and directly led to progress in the field of EB.
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