Welcome to Duchenne and You

Duchenne and You is a resource dedicated to those who have had their lives touched by Duchenne muscular dystrophy (DMD).

Whether your child or young person has been diagnosed with DMD, or you are worried that they might be showing symptoms, you have come to the right place.

As a source of knowledge and ongoing support, we will help you find out what to expect and what to do next.

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Muscular dystrophy
Neuromuscular disorders
Dystrophin
Genetics & inheritance
Duchenne Carriers
Duchenne symptoms
Resources for patients & caregivers
Treatment & care
Downloads
Resources
Diagnosis
Genetic counselling
Living with Duchenne
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DID YOU KNOW..?

Duchenne is a rare condition that mainly affects ~1 out of every 3,600–6,000 live male births

Understanding Duchenne: Duchenne muscular dystrophy: what you need to know

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Causes of Duchenne: What causes Duchenne? The importance of dystrophin

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What is the genetic cause of Duchenne muscular dystrophy?

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Duchenne inheritance: How is Duchenne passed through families?

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Understanding Duchenne: Neuromuscular disorders: What are they, what causes them and how are they treated?

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DID YOU KNOW..?

Early signs and symptoms of Duchenne muscular dystrophy may appear before a child’s second birthday

Duchenne inheritance: What does it mean to be a carrier of Duchenne?

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Duchenne signs and symptoms: When to suspect Duchenne muscular dystrophy

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Developmental milestone checklist: A tool to support Duchenne recognition

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Video: Watch this to see what Duchenne muscular dystrophy signs and symptoms may look like in day-to-day life

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Diagnosing Duchenne: Is it Duchenne? What to do if you suspect something is wrong

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DID YOU KNOW..?

Being aware of developmental milestones is an important consideration for your child’s health. While developmental delay may be nothing to worry about, it can sometimes be a sign of a muscle disorder

What to expect with Duchenne muscular dystrophy

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Resources: Physiotherapy stretching books & guides

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Diagnosing Duchenne: Learn about how Duchenne is diagnosed

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Diagnosing Duchenne: Why is early diagnosis important?

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Your stories: A mother’s account of family life after receiving a Duchenne muscular dystrophy diagnosis for her son

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DID YOU KNOW..?

It is estimated that about 20,000 children are diagnosed with Duchenne globally each year.

Prenatal diagnosis: What is it and who is eligible?

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Genetic counsellors: What does a genetic counsellor do and how do they help families with Duchenne?

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Treating Duchenne: Importance of timely intervention

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Treatment options: Learn more about Duchenne treatments and supportive care options

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Your care team: Find out which healthcare professionals are involved in a Duchenne muscular dystrophy care team

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DID YOU KNOW..?

The most common forms in children, Duchenne and Becker, affect approximately 1 in every 5,600 to 7,700 males ages 5 to 24

Finding support: Why you need it and how to get it

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Duchenne life hacks: Practical tips and tricks to make life easier

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School: Duchenne and school – what you need to know

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Breaking the news: Five tips to make telling friends and family members about Duchenne easier

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Keeping independence: How lifestyle adjustments and adaptive technologies can help

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DID YOU KNOW..?

Whilst there is no cure for Duchenne, management and treatment options may help delay or slow disease progression and improve quality of life

Latest research: The latest key scientific papers on Duchenne muscular dystrophy

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Resources: Free Duchenne materials that you can download and print

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Videos: Physiotherapy exercises for Duchenne​

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Local support: Find out about your local patient organisations and groups

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Videos: Physiotherapy exercises for Duchenne

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