World Duchenne Awareness Day 2024 granted patronage by European Parliament

Amsterdam, 18 June 2024 — The European Parliament has officially granted its patronage to World Duchenne Awareness Day 2024, which will take place on 7 September 2024. This endorsement was granted by Roberta Metsola, President of the European Parliament.

We are honored to receive the patronage for World Duchenne Awareness Day 2024, and receiving recognition for this cornerstone event for the Duchenne community. This year’s theme is ‘Raise your voice for Duchenne‘.

The announcement is following the United Nations official designation of September 7th as World Duchenne Awareness Day. The resolution, adopted by consensus unanimously by all Member States, was the UN’s first formal acknowledgment of a day dedicated to a rare disease.

“This endorsement by the European Parliament is a huge boost for the visibility of Duchenne, and the World Duchenne Awareness Day”, says Elizabeth Vroom, chair of the World Duchenne Organization. “In addition to attracting media attention and public interest, hopefully it can gather more momentum for our ongoing advocacy efforts for policies that create better lives for people living with dystrophinopathies.”

The World Duchenne Organization would like to thank the European Parliament and in particular Mrs Metsola for this acknowledgement.