Female Carriers

What is a female carrier? A carrier is a person who carries a genetic mutation in their genes. This mutation can be passed on to their children. In Duchenne, only females can be carriers because the mutation is located on the X chromosome. This means that while Duchenne is primarily found in males, it can affect females as well.

Understanding what it means to carry a genetic mutation can be confusing and often difficult to navigate. We created this helpful guide of empowering resources so carriers in our community can better advocate for themselves and their families. If you have any questions or need additional support, please reach out to us, and we will be happy to help in any way we can.

Testing has changed over the years. If you were tested many years ago, it’s may be worth reaching out to your provider or Parent Project Muscular Dystrophy to discuss genetic testing. Please view our Duchenne genetics Community Webinar with PPMD to learn more.

Featured Resources

Diagnosis from Jett Foundation

The Journey to Diagnosis and Next Steps for Female Carriers of Duchenne muscular dystrophy.

Book of Knowledge

Jett Foundation’s Book of Knowledge for Female Carriers of Duchenne muscular dystrophy.

Support Groups

Porch Nite

A support group for moms of individuals living with Duchenne to connect about their journey, spread love, offer support, and more.

Carrier Conversations

Jett Foundation’s monthly virtual support group for women in the Duchenne community who are carriers of Duchenne muscular dystrophy (whether they are manifesting or not).

Resources for Female Carriers

Action Duchenne

A Leaflet for Women Who Know They Are, or Who Think They May Be, a Carrier for Duchenne or the Milder Form of Becker.

Defeat Duchenne

Cardiac Care of Children with Dystrophinopathy and Females Carrying DMD-Gene Variations.

Jett Foundation

Jett Foundation’s Women in Duchenne Panel discussion recorded on World Duchenne Awareness Day 2022.

Penn Medicine

Center for Inherited Cardiovascular Disease

Rare Disease Advisor

Article: Female Carriers of Duchenne Urged to Seek Early Treatment for Heart Problems

ScienceDirect

Duchenne and Becker Carriers: Evidence of Cardiomyopathy by Exercise and Cardiac MRI Testing

UMass Chan Medical

The Duchenne Program – UMass Clinical Care – includes Females with Dystrophinopathy

World Duchenne Organization

World Duchenne Organization’s WDAD Educational Event: Women and Duchenne

Neurology Genetics

Whole-Body Skeletal Muscle MRI Patterns in Female Dystrophinopathy Carriers

Physicians Who Treat Female Carriers

Resources from Parent Project Muscular Dystrophy

Pat Chats: Dr. Teresa Wang (UPenn) Discusses the Duchenne and Becker Carrier Clinic Pilot

First Results from PPMD/ Nationwide Carrier Study: Evidence of Cardiomyopathy by Exercise & Cardiac MRI

Carrier Archives: view all PPMD’s recent materials and events pertaining to female carriers.

Genetic Testing: Decode Duchenne Program

PPMD one-pager for female carriers of Duchenne muscular dystrophy.

Latest Duchenne News

July 3, 2026
On June 30, 2026, Sarepta Therapeutics, Inc. announced that the U.S. Food and Drug Administration (FDA) has accepted for filing the supplemental New Drug Applications (sNDAs) for AMONDYS 45® (casimersen)...
July 3, 2026
On June 29, 2026, Satellos Bioscience Inc., announced that the U.S. Food and Drug Administration (FDA) has granted Fast Track designation to SAT-3247 for the treatment of Duchenne. Please read...
July 3, 2026
On June 26, 2026, Solid Biosciences, Inc. shared a Letter to the Duchenne Community containing updates on the INSPIRE DUCHENNE and Phase 3 IMPACT DUCHENNE clinical studies, regulatory engagement, and...