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World Duchenne Organization

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World Duchenne Organization

Help raise awareness for people living with Duchenne and Becker who urgently need good medical care. https://www.worldduchenne.org/

Duchenne and Becker MD are rare genetic diseases defined by muscle weakness. Muscles are progressively getting weaker over time and this ultimately affects the ability to breathe as well as the function of the heart, as the heart is a muscle too. People born with Duchenne and Becker will require care from different medical specialists throughout their lives. In most countries, the average age of d

iagnosis of DMD is above 4 years of age and the diagnostic delay around 2.5 years. Parents see symptoms much earlier and some symptoms are already visible when the children are very young. Lack of awareness of DMD in (first line) health care professionals seeing these children is a major factor that contributes to this delay. With the current standards of care, people with Duchenne can live into their early 30s and beyond. However, still a certain percentage of boys with DMD die in their late teens, mainly due to cardiac complications. The average life expectancy of Becker patients is somewhere between 40 and 50 years. However, with clinical care continuing to improve, as well as clinical trials, research and new therapies, the quality and quantity of life with Duchenne and Becker are enhanced each year. The World Duchenne Organization is a worldwide organization dedicated to finding a cure and viable treatments for DMD, to promoting good standards of care, and to inform parents around the globe. With 49 member patient organizations over the world, we globally advocate for DMD / BMD individuals to live their best lives.

22/04/2026

🚀 Call for innovative ideas in Duchenne care

Duchenne Parent Project Netherlands invites healthcare professionals, researchers, and innovators to apply for the Dr. Imelda de Groot Award.

This €10,000 incentive prize supports practical, innovative projects that directly improve care and quality of life for people with Duchenne. All ideas are welcome, ranging from clinical solutions and digital tools to initiatives that enhance participation and psychosocial support.

📅 Submission deadline: 1 October 2026
🏆 Award ceremony: 1 December 2026

The winning project will be selected by an expert jury chaired by Dr. Imelda de Groot.
📌 More information: https://www.worldduchenne.org/news/dr-imelda-de-groot-award-2026-applications-now-open/

20/04/2026

We are pleased to confirm Prof. Imelda de Groot as a speaker at the Duchenne Care Conference 2026.

Prof. de Groot is a retired specialist in rehabilitation medicine with extensive experience in Duchenne care. Her work focuses on optimizing physical function, rehabilitation strategies, and long-term patient support. She is also leading the Accredited Duchenne Centers Program, a program aiming to develop a worldwide accreditation for Duchenne Muscular Dystrophy care centers.

👉 Register for the Duchenne Care Conference 2026 or share this opportunity with a healthcare professional supporting Duchenne or Becker patients.
https://www.worldduchenne.org/news/registration-open-for-duchenne-care-conference-2026/

17/04/2026

We are delighted to welcome Prof. Ros Quinlivan to the Duchenne Care Conference 2026.

Prof. Quinlivan is Professor of Neuromuscular Disease at the UCL Queen Square Institute of Neurology and a leading clinician in the field. Her expertise spans clinical care, patient management, and improving quality of life for individuals with neuromuscular conditions, and in particular the adult neuromuscular community.

👉 Register today or share this event with healthcare professionals in your network.
https://www.worldduchenne.org/news/registration-open-for-duchenne-care-conference-2026/

15/04/2026

We are proud to announce Prof. Annemieke Aartsma-Rus as a speaker at the Duchenne Care Conference 2026.

Prof. Aartsma-Rus is Professor in Translational Genetics at Leiden University Medical Center and a leading expert in genetic therapies for Duchenne muscular dystrophy. Her work has been instrumental in translating genetic research into real-world treatment approaches.

She will provide valuable perspectives on innovation and future directions in research.

👉 Sign up for the Duchenne Care Conference 2026 or forward this invitation to a healthcare professional supporting Duchenne or Becker patients.
https://www.worldduchenne.org/news/registration-open-for-duchenne-care-conference-2026/

11/04/2026

We are pleased to welcome Francesco Muntoni as a confirmed speaker at the Duchenne Care Conference 2026.

Prof Muntoni is Chair of Pediatric Neurology at University College London and Director of the Dubowitz Neuromuscular Centre. He is internationally recognized for his work in neuromuscular disorders and has played a key role in advancing care and research in Duchenne and Becker muscular dystrophy.

👉 Register now for the Duchenne Care Conference 2026: https://www.worldduchenne.org/news/registration-open-for-duchenne-care-conference-2026/

08/04/2026

⏰ Registration is now open for the Duchenne Care Conference 2026!

We invite healthcare professionals and patient organization representatives to attend the Duchenne Care Conference 2026, taking place online on May 26 and 27, 2026.

🤝 The Duchenne Care Conference is an annual international event dedicated to improving care for individuals living with Duchenne muscular dystrophy and Becker muscular dystrophy.

Attending the Duchenne Care Conference offers healthcare professionals and patient advocates the opportunity to:
→ Stay informed on the latest insights and developments in Duchenne and Becker care
→ Learn from internationally recognized experts in the field
→ Strengthen collaboration between healthcare professionals and patient organizations
→ Gain practical knowledge to improve patient outcomes

📌 More information and registration: https://www.worldduchenne.org/news/registration-open-for-duchenne-care-conference-2026/

26/03/2026

Growing up with a brother who has Duchenne muscular dystrophy: emotions, challenges, and the future in Tobias’s story.

19/03/2026

We are in Chile for the first Latin American symposium on Duchenne muscular dystrophy, organized by Fundación Duchenne Chile. A very important educational initiative to change the lives of thousands of people.

13/03/2026

Professor Eugenio Mercuri of the Policlinico Gemelli in Rome has received the Medicine Award from the IRTI Foundation.

The World Duchenne Organization congratulates the professor on this important recognition of his great professionalism and profound humanity. Fondazione Policlinico Universitario Agostino Gemelli IRCCS

05/03/2026

On February 27, the Global Duchenne Community Meeting took place in Rome.
Advocates and experts gathered in the same room.
Many voices, many stories, one common cause.

03/03/2026

Prof. Muntoni receives the Novo Nordisk Prize

We support a wide range of projects and initiatives that benefit people’s lives, society and the planet. We have three focus areas.

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http://www.worldduchenne.org/

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