Newly Diagnosed · Build Your Care Team
Build Your
Care Team
Every family’s care team looks a little different. This page helps you understand who you may meet, why they matter, and how your team grows over time as your child’s needs change.
Who starts the team?
A neuromuscular specialist usually leads your child’s care. This is often the first doctor families meet after diagnosis.
From there, other specialists—like cardiology, pulmonology, and therapies—join the team over time, based on your child’s needs and the right timing.
Your care team works together to support your child’s health, daily function, and quality of life, now and in the future.
You are not expected to know everything. Your team is here to help you take one step at a time.
Think of it this way…
Your child’s care team is not a crowd you meet all at once.
It is more like a path.
The right people step in as they are needed, and each one helps keep your child moving forward.
You are the guide, and your team is here to walk with you.
- You and your child
- Start with neuromuscular care
- Add heart, lung, and therapies
- Build the team that’s right for you
Things families
often ask first
- Who do we need to see now?
- What can wait?
- Who coordinates care?
- What should we track between visits?
There is no one-size-fits-all answer. Your team will help prioritize what matters most.
How the team grows
Your team expands step by step.
Care usually begins with neuromuscular care to confirm diagnosis and establish a plan.
Over time, heart, lung, therapy, and other specialists join in—based on recommended timing and your child’s unique needs.
The team grows with your child.
What early visits
are really for
Many early appointments are about:
- Establishing a baseline
- Getting to know your team
- Learning the plan
- Understanding who to call
They are not because your child is getting worse.
Specialists you may
meet over time
- Neuromuscular
- Cardiology
- Pulmonology
- Physical Therapy
- Occupational Therapy
- Primary Care
- Gastroenterology
- Endocrinology
- Orthopedics
- Behavioral Health
- Social Work
You do not need the whole map today
It is okay to feel unsure. You do not need the whole map today.
Take one step at a time, ask questions, and come back to this page whenever new needs arise.
DMD Pathways is here to help you navigate, connect, and find what you need, when you need it.
What We Wish Someone Had Told Us
Honest advice and lessons learned from Duchenne families who’ve been there.
At first, the care team can look like a lot. But in real life, you usually do not start with the whole team at once. You get to know specialists one at a time, as your child needs them and as new questions come up.
Many early visits are about establishing a baseline, building relationships, and understanding who is on your team—not because your child is getting worse.
Over time, the pieces start to make sense, and you begin to see how each person supports your child in a different way.
You build this team step by step, and that is exactly how it is supposed to happen.
— From parents who have walked this road before you.
Most families
read this next…
- 1Neuromuscular Specialist
- 2Cardiology
- 3Pulmonology
- 4Physical Therapy
- 5Your Extended Care Team
Or return to the decision path whenever you need it.
Helpful Tools for This Step
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