A brief overview of the rationale behind next generation technology, as well as presentations from the companies in this space. Moderated discussion included.
Este panel discutirá los portadores genéticos de Duchenne, cómo comunicar el diagnóstico a otros y las experiencias con la planificación familiar.
Presidenta, Coalición Latinoamericana DMD/DMB
Coalición Latinoamericana DMD/BMD
Consejera Genética Certificada
Hospital de Niños de San Antonio
This resource discusses managing Duchenne in a school setting: IEP vs. 504 Plans, modifications and accomodations in a school setting, and communicating with educators about Duchenne.
Esta sesión está destinada a familias/cuidadores de adolescentes y adultos con Duchenne. Cubre cuatro pilares del viaje transicional de Duchenne: Continuidad de la atención, Planificación del estilo de vida, Éxito financiero y Escuela/Carrera/Pasatiempos, y es seguido por una sesión de discusión/Preguntas y respuestas.
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
Pediatric Gastroenterologist
Nationwide Children's Hospital
Director, Payer Relations
Little Hercules Foundation
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.
Professor and Associate Chair
University of Florida, Department of Pediatrics
Associate Professor of Pediatrics, Neurology and Neurotherapeutics
University of Texas Southwestern
Post Doctoral Fellow
University of Arkansas for Medical Sciences
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.
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
Director, Payer Relations
Little Hercules Foundation
Pediatric Gastroenterologist
Nationwide Children's Hospital
PTC Industry Presentation
Senior Medical Science Liaison, Medical Affairs
PTC Therapeutics
Este recurso proporciona información sobre las actividades en la piscina y las rutinas de estiramiento adecuadas.
