Newly Diagnosed Walking & Active School & Participation Growing Independence Finding Treatments & Clinical Trials Caring for Yourself & Your Family Adult Living

The Duchenne Journey

Every family's path is different. Use this map to explore the stages, decisions, and resources that may be helpful now—or later.

Newly Diagnosed
A place to begin understanding the diagnosis and deciding what comes next.
Confirm the Diagnosis Understand Your Genetic Report Additional Testing Build Your Care Team Learn About Duchenne Find Support Prepare for Early Appointments
Walking & Active
Guidance for supporting health, mobility, participation, and everyday life during the ambulatory years.
Understanding Standard of Care Physical Therapy & Movement Equipment & Mobility Support Everyday Activities Nutrition & Bone Health Staying Active & Safe
School & Participation
Information to help children participate fully in school, activities, friendships, and community life.
Planning for School Accommodations & Accessibility Activities & Inclusion Helping Others Understand Duchenne Resources for Educators Transition Planning
Growing Independence
Resources that help young people build confidence, make choices, and take a more active role in their own lives.
Building Everyday Independence Self-Advocacy Education, Work & Future Goals Decision Making Preparing for Adult Care
Finding Treatments & Clinical Trials
Plain-language guidance for understanding treatments, research, and possible next steps.
Explore Approved Treatments Understand Clinical Trials Trial Matching Prepare to Speak With a Research Site Talk to a Navigator Review Trial Results
Caring for Yourself & Your Family
Support for caregivers, siblings, relationships, emotional well-being, and practical demands.
Caregiver Support Supporting Siblings Emotional Well-Being Financial & Practical Resources Building Your Support Network
Adult Living
Resources for building an adult life shaped by the person's own priorities, goals, relationships, and choices.
Living Arrangements & Support College, Work & Purpose Relationships & Community Managing Adult Healthcare Planning for the Future

Not Sure Where to Begin?

You do not need to know which stage or resource fits best.
Tell us what is happening, and we will help point you in the right direction.

Talk to a Navigator

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