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Researching Duchenne to feel empowered

More videos

Colin Werth

Finding trusted Duchenne care

Honest conversations with MD

Speaking up in Duchenne care

Overlooked support

Collaborative care

Community insights

Trusting specialists

Regular huddles

PT frustration

See more videos

Alan Chaulet has Duchenne and lives in Lexington, Massachusetts. Diagnosed in 1993, he’s now 34 years old and has served in many advocacy positions. He shares his advice for those who feel disempowered as care partners in clinical spaces.

Transcript

Empower yourself, like do the research — understand the facts, all the different medicines out there. And think there’s quite a few things you can do, but yeah, you definitely have to be empowered as a patient and know that they simply work for you.

Like, you’re in charge of what care and medicines you do take. I think definitely doing the research, also speaking with other families and see what works, what doesn’t, doing what your specialists say. But I think the most important thing is being empowered as a patient.

More videos

Initiating honest conversation with Duchenne teams
Brenda Wong, MD
Valuing overlooked members in Duchenne care teams
See more videos

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