Wissen rund um Duchenne

Organisationen

Schweiz
Schweizerische Muskelgesellschaft
Progena
Association Suisse Romande Intervenant contre les Maldies neuro-Musculaires (ASRIMM) Orphannet
Swiss-reg-NMD Schweiz
Schweiz. Stiftung für die Erforschung von Muskelkrankheiten (FSRMM)
ProRaris

Deutschland
Deutsche Gesellschaft für Muskelkranke
MD-NET (Deutschland)
Deutsche Duchenne Stiftung (Hefte Hilfsmittel, Broschüre)
Patientenregister DMD Deutschland
Treat-NMD (Neuromuskuläres Netzwerk)

Europa
Scope-DMD (Exon Skipping EU)
Exonskipping.eu
Care-NMD (EU) Verbesserung der Behandlung von Muskeldystrophie Duchenne

Grossbritannien
Action Duchenne (Elternorganisation )
Muskular-Dystrophie (Forschung)
United Parent Projects Muscular Dystrophie (UPPMD)

USA
Cure duchenne (USA)
Parent Project MD (Elternorganisation)

Publikationen

Gruebner O, van Haasteren A, Hug A, Elayan S, Sykora M, Albanese E, et al.
Mental Health Challenges and Digital Platform Opportunities in Patients and Families Affected by Pediatric Neuromuscular Diseases – Experiences from Switzerland. Digit Health (2023)

Gruebner O, van Haasteren A, Hug A, Elayan S, Sykora M, Albanese E, et al.
Digital Platform Uses for Help and Support Seeking of Parents with Children Affected by Disabilities: Scoping Review. J Med Internet Res (2022) 24(12): e37972

Henzi BC, Baumann D, Erni SJ, Lötscher N, Tscherter A, Klein A, et al
Effects of the COVID-19 Pandemic on Access to Education and Social Participation in Children and Adolescents with Duchenne Muscular Dystrophy in Switzerland. Neuropediatrics (2023) 54:287–91

Waldboth V, Patch C, Mahrer-Imhof R, Metcalfe A
The Family Transition Experience when Living with Childhood Neuromuscular Disease: A Grounded Theory Study. J Adv Nurs (2021) 77(4):1921–33