Friday September 7, countries all over the world organize events concerning the topic Standards of Care for Duchenne Muscular Dystrophy. Part of the events are conferences, balloon releases and other awareness and fundraising efforts. Amongst Australia, Greece, Norway, and Switzerland, an international conference will be held in The Netherlands by Duchenne Parent Project, in line with the World Duchenne Awareness Day.
During this conference at the OBA, the Amsterdam Public Library, health care professionals and patient advocates from all over the world are joining the discussion aroundthe implementation of the latest Standards of Care. An update of these Standards of Care were published early 2018 in the Lancet (Neurology). During the Duchenne Care Conference, the most relevant topics of these updated Care Considerations will be presented, followed by discussions of the implementation of the Standards of Care.
During the conference, a live stream will be made available for the public that can be found here: https://www.youtube.com/channel/UCirsVikmr67rzrLNDiNtb6w
International speakers include:
prof Eugenio Mercuri, pediatric neurology (Rome, IT)
dr Jarod Wong, endocrinology (Glasgow, UK)
prof Jonathan Finder, pulmonology (Pittsburgh, US)
dr Linda Cripe, pediatric cardiology (Colombus, US)
dr Anne Connolly, pediatric neurology (St Louis, US)
Marleen van den Hauwe, physical therapy (Leuven, BE)
Accreditation is requested for Neurology, rehabilitation, pediatrics and physical therapy.
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
For more information and the full programme for the Duchenne Care Conference, head over to https://duchenne.nl/duchenne-care-congres/.