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

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

Duchenne Guide for Families can be downloaded from the TREAT-NMD website.

Read online, print or download a selection of free booklets designed to help explain and answer questions about Duchenne. These materials have been developed and funded by PTC Therapeutics.

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