RESOURCES

Knowing where to begin after a Duchenne diagnosis can be challenging, but we are here to help.

In this section you will find support materials as well as links to resources and information beyond the Duchenne and You site to help get you started.

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Reach out to the Duchenne Community

You are not alone facing the challenges of Duchenne. Within your country there will be a number of patient organisations and groups that you can go to for more information and support relevant to your local country.

Please use the drop down list below to view groups available in your country. Please note this is not an exhaustive list and there may be other organisations not listed here for your country.

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EURORDIS WDO EAMDA
EURORDIS WDO EAMDA
EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare disease in Europe and beyond. The World Duchenne Organisation (WDO)is an advocacy group managed organisation set up by parents and families of those with Duchenne around the world. European alliance of Neuromuscular disorders associations (EAMDA) is a nonprofit umbrella organization that connects together neuromuscular disorders associations across European Union.
http://www.eurordis.org/ https://worldduchenne.org/ http://www.eamda.eu/
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Videos

COULD IT BE DUCHENNE?

This video explains what some of the common signs of Duchenne – such as developmental delay, walking with a waddling gait, and not keeping up with children of a similar age – may look like in everyday life, and why recognising them as early as possible is so important.

Learn about the different stretches your physiotherapist may have recommended to do at home to help prevent the loss of flexibility that comes with Duchenne.

These videos are provided as examples only and are not intended to replace any advice given by your healthcare professional.

The stretches demonstrated in the videos should only be carried out if deemed suitable by your healthcare professional.

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Downloads

Treat DMD Resource

The Guide for Families, can be downloaded from www.treat-nmd.org. This guide contains all the latest information on how Duchenne is diagnosed, how it progresses and the types of support and care you and your family will receive to help you through this journey.

Doctors Discussion Guide

Duchenne timeline infographic

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Duchenne comics for children

These printable comics have been created to help your child understand what Duchenne is and tell them about the team of people who will help them manage it. The comics include adventures that are easy to understand and can help them navigate their Duchenne journey. The comics have been developed and funded by PTC Therapeutics.

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