The WDO (World Duchenne Organization) Member Meeting 2023 was a highly anticipated event. The meeting saw 33 patient organizations come together online and in-person in the Gemelli hospital in Rome. The meeting, which focused on emergencies in Duchenne, was a platform for sharing experiences, learning, and inspiring others.
Part I: Emergencies
The day began with Prof Eugenio Mercuri and Prof Marika Pane sharing a story of a Duchenne boy who had an emergency in Italy. Their presentation shed light on the importance of preparedness in emergencies and the need for early intervention in Duchenne. This was followed by a panel discussion with companies on emergencies in clinical trials. This panel was moderated by Pat Furlong and Elizabeth Vroom. The panel discussion was insightful, as it explored the challenges faced in clinical trials and the steps being taken to mitigate emergencies.
Elizabeth Vroom held her presentation on health emergencies and Duchenne. She shared valuable insights on what patient organizations can do to inform hospitals and families what to do in case of emergencies, and how to support families and how to prevent emergencies. Nicoletta Madia also presented the DMD Emergency Program and the documentary ‘Help has no borders,’ highlighting the need for international collaboration in emergencies.
Part II: Member Updates
After lunch, all WDO Members presented their updates and one success story to inspire others. This was a great opportunity for organizations to share their achievements and learn from each other’s successes.
Part III: Working Groups
The meeting then moved on to interactive working groups. Members discussed improving awareness and advocacy, and social inclusion. These working groups were a great way to exchange ideas and develop strategies for addressing key issues in Duchenne.
The meeting ended with an update on WDO activities, followed by a social dinner with all members.
WDO Member Meeting recap
In conclusion, the WDO Member Meeting 2023 was a resounding success. Members were coming together to share knowledge, experiences, and strategies. The focus on emergencies in Duchenne was particularly important, as it highlighted the need for preparedness, early intervention, and international collaboration.