This resource presents information on emergency care guidelines for individuals with Duchenne, and tips on how to communicate with emergency care providers in the event of an urgent hospital visit.
Pediatric Critical Care Fellow
Riley Hospital for Children at IU Health
This resource offers information for parents, caregivers and individuals with Duchenne about the specialized aspects of emergency care for those with Duchenne.
Esta presentación se centra en las pautas nutricionales para las personas con distrofia muscular de Duchenne.
Dietista Nutricionista Registrada
Children's Hospital of Los Angeles
Registered Dietitian Nutritionist
Children’s Hospital of Los Angeles
Una presentación interactiva enfocada en definir y construir su equipo en la escuela, abordando los matices de un IEP o plan 504 para una persona con Duchenne, y un ejercicio de juego de roles sobre cómo comunicar de manera efectiva las necesidades de su familia en una reunión escolar.
Duchenne Mother, Grandmother and Advocate
4 Jake's Sake | CureDuchenne
FibroGen Industry Presentation
Executive Medical Director, Clinical Development (Fibrosis/Oncology)
FibroGen
A brief overview of the strategy guiding efforts in gene therapy and gene editing, as well as critical updates from the companies in this space. Moderated discussion included.
Chief Science Officer, Ultragenyx Gene Therapy
Ultragenyx
Vice President, Disease Area Executive, DMD
Vertex Pharmaceutical
Senior Medical Science Liaison
Sarepta Therapeutics
Presentations by CureDuchenne Champion families on how they found success in fundraising by bringing their community together.
Una presentación interactiva enfocada en aprovechar la creatividad en la vida cotidiana con actividades, juegos y ejercicios inclusivos, además de utilizar tecnología/equipos adaptables para superar las expectativas.
CureDuchenne Certified Physical Therapist
CureDuchenne Physical Therapy Program
Occupational Therapist III
Children’s Health and Rehabilitation Services
Quantum Product & Technical Education Manager
Pride Mobility
Esta presentación proporciona información sobre genética básica, salud del portador genético y planificación familiar.
Consejera Genética Certificada
Hospital de Niños de San Antonio
