Young child playing symbols with DNA strand stemming from their hand with their friend without Duchenne playing triangle

Resources and support

Learn about ways to discuss Duchenne and treatment options with a care team, connect with others in the Duchenne community, and find support for you and your family.

Pfizer's gene therapy for Duchenne muscular dystrophy is being evaluated in clinical trials and is not approved by the FDA. If FDA approved, it may not be an appropriate treatment for all children with Duchenne.

Young child playing symbols with DNA strand stemming from their hand with their friend without Duchenne playing triangle

Talking to a doctor

Here are a few questions to consider asking your care team to learn more about Duchenne and treatment options.

What are the current and potential future treatment options in Duchenne?

How do I know which treatment option is right for my child?

How is progression tracked in Duchenne?

Find support

Sometimes it helps to connect with others who are going through a similar experience. Learning through the stories of others living with Duchenne can provide a new sense of empowerment through community and shared experience. Here are a few great places to start.

The Akari Foundation logo

The Akari Foundation

To educate and empower the Hispanic community about rare diseases, like Duchenne, entirely in Spanish.

Learn more
CureDuchenne logo

CURE DUCHENNE

Helps fund Duchenne research and assists families in finding a care team.

Learn more
Jett Foundation logo

Jett Foundation

Provides support for people and families impacted by Duchenne through educational and experiential opportunities.

Learn more
Muscular Dystrophy Association logo

Muscular Dystrophy Association (MDA)

Boldly leading research, care and advocacy with the Duchenne community for over 70 years.

Learn more
Parent Project Muscular Dystrophy logo

Parent Project Muscular Dystrophy (PPMD)

Fights every single battle necessary to end Duchenne.

Learn more
Team Joseph logo

Team Joseph

Funds innovative research and provides personalized support and financial assistance to families living with Duchenne.

Learn more
The support from the Duchenne community doesn’t end here. There are many more patient advocacy and support groups available to join.
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References
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