Amsterdam, 14 June – The World Duchenne Organization successfully concluded the first 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 Duchenne Care Conference 2021 marked the first of an annual recurring online event.
Over the span of four days, the Duchenne Care Conference convened a total of 500 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 Brazilian-Portuguese, 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.
“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 care, nutrition, gastroenterology, learning and behavior, bone health, steroid stress doses, care for carriers, early detection and care, pain management, training and wheelchair seating. These topics were determined following community interest. A roundtable during the WDO Member Meeting identified care aspects that require more attention.
“A powerful and informative conference. It was an incredible experience to hear from leading specialists who continue to inspire and provide those living with and affected by DMD with hope.”
– Cara Philpott, representative from Duchenne Australia
Most of the topics were introduced using one of the DMD-Care Videos. This series of animations aims to explain the latest Standards of Care in a dynamic way and for all ages. These videos are currently available in multiple languages either by voice-over, as well as subtitles. Member organizations were invited to work together to translate the animations in even more languages.
Next to this, to share the global communities’ perspective on Duchenne Care, Nicoletta Madia interviewed members of the World Duchenne Organization from Russia, Brazil and Australia. Despite the geographical and social differences, all the families paid attention to the importance of education. Education leads to a better knowledge on the management of the disease and adherence to the international standards of care.
Dr Imelda de Groot award
Additionally, on the third day of the Duchenne Care Conference, the Dr Imelda de Groot Award was announced. During her career, doctor de Groot initiated innovative and relevant research projects in the field of Duchenne and Becker muscular dystrophy. Examples are ‘No use is disuse’ about exercise and physical activities, outcome measures and many other subjects. The goal of the award is to stimulate researchers and clinicians to develop activities in this wider field of Rehabilitation medicines for DMD / BMD.