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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
Physical Therapy: Early Intervention
This resource discusses the benefits of early intervention therapy, what to expect from a PT/OT, basic activity modifications, stretching and orthoses for children.
Video
Pilares del viaje temprano
Esta sesión está dirigida a familias/cuidadores de niños y adolescentes con Duchenne. Cubre cuatro pilares del viaje temprano de Duchenne: atención multidisciplinaria, esteroides, nutrición y participación en ensayos clínicos, y es seguido por una sesión de discusión/preguntas y respuestas.
Kindann Fawcett, PhD
Post Doctoral Fellow
University of Arkansas for Medical Sciences
Barry Byrne, MD, PhD
Professor and Associate Chair
University of Florida, Department of Pediatrics
Dr. Aravindhan Veerapandiyan
Pediatric Neurologist
Arkansas Children's Hospital
Diana Castro, MD
Associate Professor of Pediatrics, Neurology and Neurotherapeutics
University of Texas Southwestern
Video
Pillars of the Early Journey
This session is intended for families/caregivers of children and adolescents with Duchenne. It covers four pillars of the early Duchenne journey: Multidisciplinary Care, Steroids, Nutrition, and Involvement in Clinical Trials, and is followed by a discussion/Q&A session.
Barry Byrne, MD, PhD
Professor and Associate Chair
University of Florida, Department of Pediatrics
Diana Castro, MD
Associate Professor of Pediatrics, Neurology and Neurotherapeutics
University of Texas Southwestern
Kindann Fawcett, PhD
Post Doctoral Fellow
University of Arkansas for Medical Sciences
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
PTC
PTC Industry Presentation
Nicholas Mastrandrea, PhD - Speakers
Senior Medical Science Liaison, Medical Affairs
PTC Therapeutics
Video
Recursos de fisioterapia de CureDuchenne
Este recurso proporciona información sobre las actividades en la piscina y las rutinas de estiramiento adecuadas.
Programa de fisioterapia certificado por CureDuchenne
REGENXBIO
RGX-202: REGENXBIO’s investigational gene therapy for the treatment of Duchenne Muscular Dystrophy presented by: Johannaz (Naz) Dastgir, DO, Senior Director, Clinical Development Lead at REGENXBIO
A program update on RGX-202, REGENXBIO’s investigational gene therapy program for the treatment of Duchenne.
Contact: Duchenne@regenxbio.com or patientadvocacy@regenxbio.com
Johannaz Dastgir, DO
Senior Director, Clinical Development Lead
REGENXBIO
Video
