Amsterdam, 10 June – The World Duchenne Organization successfully concluded the second global online Duchenne Care Conference. This online conference connects global patient organizations in a series of interactive sessions, where top experts share their experience on specific topics of Duchenne (and Becker) care. The theme of Duchenne Care Conference 2022 was Adult Duchenne Care.
Adult Duchenne Care
Over the span of two days, the Duchenne Care Conference convened a total of 200 participants. Attendees consisted of family members, clinicians, therapists, caregivers and people living with Duchenne or Becker muscular dystrophy (DMD and BMD). The program was designed to be inclusive, with live interpretation in Spanish and Russian. Each presentation was followed by an interactive Q&A, moderated by one of the WDO Board Members. During the Duchenne Care Conference, top experts share their experience on specific topics of Duchenne (and Becker) care.
Duchenne Care Conference 2022 Recordings
The Agenda consisted of topics in line with the recently published Consensus Guideline For Adult Duchenne Care, led by Professor Ros Quinlivan. The Conference is available in several interpretations: scroll below to access the talks in Portuguese, Spanish and Russian.
- Conferencia sobre el cuidado de Duchenne 2022 (Spanish)
- Конференция по уходу за герцогством 2022 (Russian)
“Every person diagnosed with Duchenne or Becker can benefit from a Standard of Care that is informed by the best practice of the best clinicians from the world. Life expectancy of people living with Duchenne has increased enormously due to better care. Next to this, it also provides for better quality of life: not just more years, but also more years in good condition.”
– Elizabeth Vroom, WDO Chair
Speakers included leading experts in the Duchenne field of respiratory management, chest cleareance techniques, cardiology, gastro-intestinal issues, management of swallowing issues and endocrine issues. It included experiences from adult men living with Duchenne, and the organization of adult Duchenne care in various countries.