The global rare disease community is celebrating the UN’s first formal acknowledgement of a day dedicated to a rare disease. In a groundbreaking moment for the Duchenne community, 7th September will be officially observed annually from 2024.
The adoption of the resolution requires a total of 97 votes from Member States. Due to the collaborative efforts of advocates, patient organisations and individuals, it was adopted unanimously on 29th November 2023. We are proud to have joined in this collective community effort. Please read the letter we sent to Her Excellency Dame Barbara Woodward expressing the importance of this for the rare disease community across the world.
We hope that this significant acknowledgement will give us more opportunity to increase awareness and engagement, and help to move us further towards our vision of a world where lives are no longer limited by Duchenne muscular dystrophy.
