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Manejo del diagnóstico de DMD: Re-imaginemos la aventura
Esta presentación se enfoca en manejar los desafíos asociados con un diagnóstico de Duchenne.
Video
Más allá de la distrofina
Esta sesión de la conferencia brinda información sobre las terapias emergentes más allá de la restauración de la distrofina, así como actualizaciones/anuncios de las empresas en este espacio.
Abby Bronson
Vice President, Patient Advocacy & External Innovation
Edgewise Therapeutics
Daniel Paulson, MD
Vice President of Clinical Development
Capricor Therapeutics
Video
Mental Health: Living in the ‘Now’
This resource provides an in-depth view of mental health practices like mindfulness and values-based gratitude practices for adults with Duchenne navigating life’s unique obstacles.
Video
Navigating Duchenne treatment: AGAMREE & Catalyst Pathways
Join us for this pre-recorded presentation and Q&A discussing to learn about a new FDA-approved treatment for Duchenne muscular dystrophy. During the session, Catalyst Pharmaceuticals will provide an overview of how this novel corticosteroid works and its efficacy in Duchenne. You will also learn about the journey to comprehensive support and access through the well-established Catalyst Pathways patient support program.
Alison Anderson, MS, CGC
Medical Affairs Director
Catalyst Pharmaceuticals
Video
Next Generation Technology Panel
A brief overview of the rationale behind next generation technology, as well as presentations from the companies in this space. Moderated discussion included.
Video
NS Pharma
NS Pharma Industry Presentation:
VILTEPSO®(Viltolarsen) Overview
Shannon Lienert, MD
Medical Science Liaison, Medical Affairs
Video
Palliative Care and Duchenne Muscular Dystrophy
This resource provides an introduction to palliative care’s function, benefits, and how it fits into the multidisciplinary care model for Duchenne.
Tom McNalley, MD
Associate Professor of Pediatrics
University of California San Francisco Benioff's Children's Hospitals
Video
Panel de discusión: El impacto de Duchenne en la familia
Este panel discutirá los portadores genéticos de Duchenne, cómo comunicar el diagnóstico a otros y las experiencias con la planificación familiar.
Gloria Orozco
Presidenta, Coalición Latinoamericana DMD/DMB
Coalición Latinoamericana DMD/BMD
Sarah G. Seth, MPH, CGC
Consejera Genética Certificada
Hospital de Niños de San Antonio
Video
Pillars of the Transition Journey
This session is intended for families/caregivers of teens and adults with Duchenne. It covers four pillars of the transitional Duchenne journey: Continuity of Care, GI-related Care, Medical Privacy, and School/Career/Hobbies, and is followed by a discussion/Q&A session.
Pradeep P.A. Mammen, MD, FACC, FAHA
Associate Professor of Medicine and Co-Director
Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Center, Director for Translational Research for the Advanced Heart Failure and Transplant Cardiology Program, UT Southwestern Medical Center
Jennifer Shumsky, BSN, RN, CHCO, PACS
Director, Payer Relations
Little Hercules Foundation
Kent Williams, MD
Pediatric Gastroenterologist
Nationwide Children's Hospital
Video
