Category: Raise your Voice for Duchenne

Rome, 7 September 2024 – Today is World Duchenne Awareness Day 2024! With this year’s theme ‘Raise your voice for Duchenne’ we call on everyone to use your voice to raise awareness for people living with dystrophinopathies.

Recognition and blessings

This year marks an important milestone as the United Nations have officially designated September 7th as World Duchenne Awareness Day, to be observed annually from 2024 onward. This is the UN’s first formal recognition of a day dedicated to a rare disease. This emphasizes the global need for awareness and support for individuals living with dystrophinopathies, such as Duchenne muscular dystrophy (DMD).

Secondly, the European Parliament, under the patronage of President Roberta Metsola, has officially endorsed World Duchenne Awareness Day 2024. This underscores the importance of European solidarity and commitment to the rights, care, and inclusion of those affected by DMD. Additionally, Pope Francis has once again given his blessing for this day. He supports the global call for compassion, understanding, and advocacy for people living with rare diseases.

WDAD 2024 documentary

The World Duchenne Organization is launching an official documentary directed by Nicoletta Madia and produced by Arim Communication. This documentary brings to light the powerful stories of three individuals from Italy, Spain, and Brazil, each living with Duchenne muscular dystrophy. Through their experiences, the documentary highlights the themes of care, independence, support, inclusion, and education, showcasing the strength and resilience of those living with DMD.

Raise your voice for Duchenne

We urge everyone to watch and share this documentary widely to amplify these voices and raise global awareness about DMD. Together, we can create a world where people with Duchenne can live fully and in accordance with the rights they have.

Contact: World Duchenne Organization

[email protected]

About World Duchenne Awareness Day

World Duchenne Awareness Day (WDAD) raises global awareness about Duchenne and Becker muscular dystrophy (DMD and BMD). It takes place each year on September 7. The day promotes action through events and landmark lighting in red to support those affected. Established in 2013, WDAD raises awareness to improve the lives of the over 250,000 people worldwide living with these rare genetic disorders.

The trailer for the World Duchenne Awareness Day 2024 documentary is now live. The documentary, titled ‘Raise your voice for Duchenne: the documentary’ tells the stories of people living with Duchenne throughout the world, and how they are raising their voice to live their best life possible.

Stay tuned for September 7 for the official launch of the documentary!

🇮🇹 Rome, Misha, Russian, discovers Italy and life with his big eyes, with a vitality that goes beyond Duchenne.
🇪🇸 Casar de Cáceres, Spain. Fernando builds his life by engaging in work and losing himself in new worlds and cultures by studying foreign languages.
🇧🇷 Rio de Janeiro, Bruno, a champion who, with his team, found his life passion and his path to happiness in wheelchair football.

Care, network, independence, support, inclusion, education are the words that link these stories. These are the words that tell us about the rights of people with Duchenne, how to live them fully and protect them.

Trailer of WDAD 2024 documentary

The documentary of World Duchenne Organization is directed by Nicoletta Madia and produced by Arim Communication.

On September 7th, we will celebrate the 11th World Duchenne Awareness Day (WDAD), a special day recognized globally. Since we started in 2014, this day has grown in significance, highlighting the importance of improving the lives of people with Duchenne Muscular Dystrophy (DMD) worldwide. In this video, Elizabeth is calling on all to join World Duchenne Awareness Day and raise your voice for Duchenne muscular dystrophy.

This year, the theme of WDAD is ‘Raise your voice for Duchenne.’ This theme is not only for the Duchenne community but also aims to involve society at large. The goal is to ensure that individuals with Duchenne can live fulfilling lives without being hindered by the challenges that people with disabilities often face.

This includes advocating for accessibility in public transportation, leisure activities, jobs, and education. Accessibility is everywhere, and it is clearly described in legislation and proposals from the United Nations and the European Committee, that accessibility is a human right.

However, many people with Duchenne still are hindered due to the lack of implementation of these accessibility standards, leading to discrimination. Although not the biggest challenge that Duchenne patients are facing, all organizations are working hard to address this issue. Independent living should be another guaranteed human right we have to fight for around the globe. We should do our very best to make this life possible within their position.

The United Nations clearly mentioned when they recognized World Duchenne Awareness Day that access to proper diagnosis is very important for Duchenne, as it is essential to have access to good care and support. Without a diagnosis it is really hard to get the support you need.

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.