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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.

19/06/2026

World Duchenne Awareness Day 2026 !

This year’s theme is “Access Changes Lives.”

Access is a fundamental driver of better outcomes for people living with Duchenne muscular dystrophy.

A special day for an important cause. Join us in spreading awareness and making access a reality for all.

26/05/2026

The first day of the Duchenne Care Conference ended now. Thanks everyone for joining. Tomorrow new topics and speakers. In order to join the event contact [email protected]

25/05/2026

We are welcoming Dr. Mahalekshmi Desikan as a speaker at the Duchenne Care Conference 2026.

Dr. Desikan is a Consultant Neurologist at the Neuromuscular Complex Care Centre (NMCCC) at the National Hospital for Neurology and Neurosurgery, University College London (UK), with clinical expertise in neuromuscular disorders, including Duchenne and Becker muscular dystrophy.

During the conference she will present about hypoglycemia and ketoacidosis in Duchenne patients.

👉 Healthcare professionals working in Duchenne and Becker care are encouraged to register. Families are invited to share this opportunity with their healthcare teams.
https://www.worldduchenne.org/news/registration-open-for-duchenne-care-conference-2026/

24/05/2026

Today, during the roundtable dedicated to emerging countries in Madrid, key topics such as communication, care, community, data, drug development, advocacy, and social aspects were discussed. Five continents were represented, bringing together dozens of different perspectives. A step forward for the global community.

The initiative, promoted by Duchenne Data Foundation in collaboration with World Duchenne Organization and with the logistical support of Duchenne Parent Project España, was carried out within the framework of the Stronger Voices project, supported by Italfarmaco, Roche, Sarepta Therapeutics, Entrada Therapeutics, Avidity Biosciences, BioMarin Pharmaceutical, Dyne Therapeutics, Edgewise Therapeutics, Santhera Pharmaceuticals, Solid Biosciences, and Wave Life Sciences.

24/05/2026

Today, during the roundtable dedicated to emerging countries in Madrid, key topics such as communication, care, community, data, drug development, advocacy, and social aspects were discussed. Five continents were represented, bringing together dozens of different perspectives. A step forward for the global community.

The initiative, promoted by Duchenne Data Foundationin collaboration with World Duchenne Organization and with the logistical support of Duchenne Parent Project España, was carried out within the framework of the Stronger Voices project, supported by Italfarmaco, Roche, Sarepta Therapeutics, Entrada Therapeutics, Avidity Biosciences, BioMarin Pharmaceutical, Dyne Therapeutics, Edgewise Therapeutics, Santhera Pharmaceuticals, Solid Biosciences, and Wave Life Sciences.

24/05/2026

We are welcoming Dr. Ann Agnes Mathew as a speaker at the Duchenne Care Conference 2026.

Dr. Mathew is a Pediatric Neurologist at Bangalore Baptist Hospital (IN), with clinical expertise in neuromuscular disorders, epilepsy, and child neurological health. At the Duchenne Care Conference, she will present about building a multidisciplinary neuromuscular ecosystem in India.

👉 Healthcare professionals are encouraged to register, and families are warmly invited to share this opportunity with their healthcare teams.
https://www.worldduchenne.org/news/registration-open-for-duchenne-care-conference-2026/

23/05/2026

We are pleased to welcome Prof. Karim Wahbi as a speaker at the Duchenne Care Conference 2026.

Prof. Wahbi is a Cardiologist at the Institute of Myology and Cochin Hospital, and Professor at Assistance Publique – Hôpitaux de Paris (FR). He is internationally recognized for his expertise in cardiac management in neuromuscular disorders, particularly Duchenne muscular dystrophy.

During his talk he will explain when cardiac MRI adds the most value in Duchenne care.

👉 Healthcare professionals are encouraged to register, and families are invited to share this conference with their healthcare teams.
https://www.worldduchenne.org/news/registration-open-for-duchenne-care-conference-2026/

21/05/2026

We are happy to announce Elizabeth Vroom as a speaker at the Duchenne Care Conference 2026.

Ms. Vroom, DDS, is Co-founder and Chair of the World Duchenne Organization, and Co-founder of Duchenne Parent Project (NL). In addition to this she is a long-standing advocate for the global Duchenne community, playing a key role in strengthening international collaboration and patient involvement in care and research. At Duchenne Care Conference, she will speak about the urgency of having an Emergency Card.

👉 Healthcare professionals are encouraged to register, and families are invited to share this event with their care teams. Click the link in our bio for more information.

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http://www.worldduchenne.org/

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