Healthcare access, satisfaction, and health-related quality of life among children and adults with rare diseases

por Bogart, Kathleen, Hemmesch, Amanda, Barnes, Erica, Blissenbach, Thomas, Beisang, Arthur, Engel, Patti
Publicado 2022

Toward patient-centered treatment goals for duchenne muscular dystrophy: insights from the “Your Voice” study

por Schwartz, Carolyn E., Jackson, Skyler, Valentine, James, Miller, Natalie, Lowes, Linda, Edwards, Danielle, McSherry, Christine, Savva, Dimitrios, Lowe, Alex, McSherry, Jordan, Engel, Patti
Publicado 2023