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On 7 September 2021, the World Duchenne Organization hosted an online event on Adult Life & Duchenne. The event gathered people from over 50 countries to listen to stories and experiences surrounding DMD and adult life. The World Duchenne Awareness Day 2021 event ‘Adult Life & Duchenne’ is available with SpanishRussian and Ukrainian interpretation.

For more information, visit the World Duchenne Awareness Day website.


  • Elizabeth Vroom: Opportunities and challenges in Adult Life & Duchenne
  • Interview: Eilan Golan from Israel
  • Prof Ros Quinlivan: Guidelines on Duchenne Adult Care
  • Interview: Jacopo Verardo from Italy
  • Nicoletta Madia: Insights from the Social Duchenne project
  • Dr Jos Hendriksen: Psychosocial aspects of Adult Life & Duchenne
  • Pedro Martinez from Brazil
  • Hlawulani Mkhabela: Resolution4Rare
  • Adith Thummalapalli from the United States
  • Elizabeth Vroom: What patient organizations can do
  • Interview: Suzanne Glover from Pathfinders Alliance
  • Audience Q&A