Duchenne | and you

Duchenne’s Muscular Dystrophy (DMD) Resources

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There is a wealth of information available to people dealing with a DMD diagnosis. We have compiled a list of information for you on this page, including:

  • Resources you can access directly, including various local support groups
  • Videos with plenty of practical advice
  • Free downloads of DMD materials
  • Information on meetings and events about DMD

By providing you with these materials, we can help you better understand how to help manage DMD.

Downloadable materials and resources

A Summary of the DMD Care Considerations Working Group for Caregivers (English & Spanish) Learn more about care guidelines for DMD that address a multidisciplinary approach and the continuum of care for DMD management.

DMD comics for children

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

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Coloring books

English

Spanish

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Caregiver considerations summary

English

Spanish

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Doctor’s appointment discussion guide

This quick-reference resource can help you prepare for your child’s next doctor visit.

Navigating scientific publications

This resource will help you to familiarize yourself with the elements and terms that are commonly seen in different types of scientific publications; very useful when reading medical journal articles.

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My Vibe

We believe every story in the rare disease community deserves to be told.
Insightful Moments My VIBE shares experience straight from the Voices of Inspirational, Brave, and Empowering patients and families. Click here to hear some of the most recent

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Duchenne guide for families

Developed by TREAT-NMD, this guide contains all the latest information on how DMD is diagnosed, how it progresses and the types of assistance available.

Take on Duchenne podcast

The Take on Duchenne North America podcast brings scientific leaders who work in the Duchenne Muscular Dystrophy (DMD) field to the table to share their knowledge. This podcast aims to educate and raise awareness of DMD among those interested in learning more about this progressive genetic disease.

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This site is intended for US residents only.
The information on this site is not intended to make a diagnosis or to take the place of talking to a US health care professional.

PTC Cares™ is a trademark of PTC Therapeutics.
© 2022 PTC Therapeutics, Inc. All rights reserved.

Date of preparation: September 2022
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Important Terms and Concepts

Basic terms and key definitions

Neuromuscular disorders

Neuromuscular disorders affect the muscles and nerves, and most of the causes are genetic. This means they are either passed down through the family or caused by changes in an individual person’s genes.

Most neuromuscular disorders cause muscle weakness that worsens over time. Signs and symptoms of neuromuscular diseases can vary and may be mild, moderate, or severe.

Most often, when a child has a neuromuscular disease, they don’t grow and develop as fast as other children their age. They are often slow to start lifting their head, sitting, walking, and talking.

Treatment and supportive care may improve the symptoms of a neuromuscular disorder, increasing mobility and even life expectancy.

Muscular dystrophy

Muscular dystrophy is the term for a group of neuromuscular disorders that cause muscle weakness and muscle loss.

Duchenne muscular dystrophy (DMD) is a type of muscular dystrophy that causes muscle weakness that worsens over time. The progression and symptoms can vary from person to person.