PPMD CEO and President Pat Furlong and Buddy Cassidy spoke yesterday in front of 60+ diplomats to encourage ambassadors to the United Nations and members of the World Health Organization to support a draft resolution to recognize September 7, as “World Duchenne Awareness Day”.
The event was organized by Duchenne parent, Tareq M.A.M. Albanai, the Ambassador from Kuwait, and his wife and PPMD Board member Rasha Alnaibari, with the hope of raising global awareness of the challenges and needs faced by individuals and families in the rare diseases community.
In her remarks, Pat emphasized, “By fostering a deeper understanding of this condition, we can empower communities, healthcare professionals, and policymakers to prioritize early diagnosis, intervention, and support for these individuals and their families.”
The resolution will be considered for a vote at the November 29th UN General Assembly meeting. We hope to see the event live-streamed and will share details if so.