The World Duchenne Organization is organizing an online educational event on Adult Life & Duchenne. The free event on September 7 will be accessible for everybody via Zoom, and is available with live Spanish interpretation.
Speakers include Prof. Ros Quinlivan, Dr. Jos Hendriksen, Nicoletta Madia, Elizabeth Vroom and a representative from Rare Diseases International. Apart from these, Duchenne adults from different parts of the world will share their experience of living with Duchenne.
Over the past decades, the life expectancy of people living with DMD has increased significantly. This can largely be attributed to improved care. Care considerations for Duchenne were published in 2010 and updated in 2018. However, these guidelines are focus primarily on the pediatric population of people living with Duchenne.
Adult Life & Duchenne
Adults with DMD are facing other challenges than children. Not just from a medical perspective, but also regarding daily care and participation in our society. This World Duchenne Awareness Day marks the starting point for a more inclusive society where adults with Duchenne can live their lives to the fullest.
On September 7, the World Duchenne Organization is organizing a live event from 14:00 to 16:00 Central European Summer Time. During these 2 hours, various experts will share their experience and knowledge on adult life with Duchenne.
The event will be held in English with an option for simultaneous interpretation into Spanish. More languages will be added. The online event will be accessible to everyone who registered. The event will be recorded and the video subsequently made available.
Apart from being of interest to caregivers and people living with Duchenne MD, the event will be of particular interest to clinicians and other healthcare professionals, employers interested to hire people living with a disability, and government institutions.