Duchenne Care Conference
Early 2018 an update on the International Care Considerations was published in the Lancet (Neurology)*. During the Duchenne Care Conference on September 7, 2018 in the OBA, the Amsterdam Public Library ,the most relevant topics of these updated Care Considerations were presented followed by discussions on the implementation of the Standards of Care.
Diagnosis and management of Duchenne muscular dystrophy
- Part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management
- Part 2: respiratory, cardiac, bone health, and orthopaedic management
- Part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan
Videos of the conference: Youtube Duchenne Parent Project .
Management of steroid treatment – 10 days on and 10 days off – dr Erik Niks (LUMC, NL)
Cardiac management of DMD: Implications for the Netherlands – dr Arno Roest (LUMC, NL)
Can eHealth improve care and research in DMD- prof Douwe Atsma (LUMC, NL)
Respiratory management, Dutch approach – prof Peter Wijkstra (UMCG, NL)
Physiotherapy, Standards of Care in the Netherlands – dr Menno van der Holst (LUMC, NL)
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