KATHMANDU, DECEMBER 3
The United Nations has officially designated September 7 as World Duchenne Awareness Day, marking a momentous milestone for the global rare disease community.
This marks the UN's inaugural formal acknowledgment of a day dedicated to a rare disease.
The resolution's adoption required a total of 97 votes from member states and was unanimously adopted by consensus on November 29. Remarkably, the resolution garnered sponsorship from 128 member states, the highest number of co-sponsorships in the 78th session of the UN.
Tareq Albanai, Kuwait's Permanent Representative to the United Nations, and his wife Rasha Alnaibari, led the global movement, driven by their personal connection as their son lives with Duchenne.
The foundation for this historic occasion was established during an event titled "Leaving No One Behind: Igniting Awareness for Duchenne Muscular Dystrophy," hosted by the Permanent Mission of the State of Kuwait in New York City on November 15.
Nirmal Khadka, Chairperson of Rare Diseases Society Nepal, emphasized, "It's a historic moment as it fosters a deeper understanding of the disease."
He further added that it can empower communities, healthcare professionals, and policymakers to prioritize early diagnosis, intervention, and support for patients and their families.
