Lessons from an Experiential Approach to Patient Community Engagement in Rare Disease.

Smith, Jeffrey; Damm, Kelly; Hover, Gretchen; Chien, Janet

Smith, Jeffrey; Damm, Kelly; Hover, Gretchen; Chien, Janet.

Affiliation

Smith J; Wave Life Sciences USA Inc, Cambridge, MA, USA. Electronic address: jsmith@wavelifesci.com.
Damm K; Wave Life Sciences USA Inc, Cambridge, MA, USA.
Hover G; Imbue Partners LLC, Middleton, MA, USA.
Chien J; Imbue Partners LLC, Middleton, MA, USA.

Clin Ther ; 43(2): 421-429, 2021 02.

Article in En | MEDLINE | ID: mdl-33375998

Subject(s)

Community-Based Participatory Research; Muscular Dystrophy, Duchenne/therapy; Parents; Patient Participation; Adolescent; Caregivers; Child; Child, Preschool; Drug Discovery; Female; Humans; Male; Organizations; Rare Diseases; United States; United States Food and Drug Administration; Young Adult

Key words

Duchenne muscular dystrophy; community engagement; drug discovery; patient advocacy; patient engagement

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Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Parents / Patient Participation / Muscular Dystrophy, Duchenne / Community-Based Participatory Research Limits: Adolescent / Adult / Child / Child, preschool / Female / Humans / Male Country/Region as subject: America do norte Language: En Journal: Clin Ther Year: 2021 Type: Article

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