The Duchenne Community

Finding strength in community.

When your child is newly diagnosed with Duchenne muscular dystrophy, you may not know for sure what’s ahead, but many others in the community do. Connect with patients and parents of children with Duchenne for the kind of support you can’t get anywhere else.

Start connecting.

The groups below—many founded by parents of children with Duchenne—help connect patients and families to education, research, support services, and the broader Duchenne community. Here are just a few of the organizations that work to raise both awareness of Duchenne and funds directed toward research, while providing programs and information to help individuals with Duchenne.

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Get help with genetic testing.

If your child has been diagnosed with Duchenne and you’ve been unable to access genetic testing because of financial barriers, there are programs that may be able to help. Decode Duchenne and Detect Muscular Dystrophy offer free genetic testing to the Duchenne community and can provide genetic counselors to interpret test results.

Decode Duchenne is administered by Parent Project Muscular Dystrophy and The Duchenne Registry. Decode Duchenne is sponsored by Sarepta Therapeutics and NS Pharma.

Visit Decode Duchenne or Detect Muscular Dystrophy to learn more.

“I recommend utilizing all the resources at your disposal for support.”

–Sue, Levi's mom

Related FAQs

Why is genetic testing important?

A genetic test will confirm a diagnosis of Duchenne and allow your child’s doctor to identify the genetic mutation, so treatment options can be considered, and to assist with family planning. Understanding genetic testing.

We have a genetic test. How do I know if my child can be treated with AMONDYS 45?

A doctor will need to interpret the test results to consider appropriate treatment options. Learn more about deletions.

What support is available for people being treated with AMONDYS 45?

We developed SareptAssist, our patient support program, to help patients start and stay on therapy. You’ll have support at every step—from managing insurance approvals to coordinating drug delivery. See how to get started.

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Ongoing support and information from Sarepta.

Receive future tips and support about treatment with AMONDYS 45.

Stay informed about SareptAssist services.

Find out about patient resources that are available.

Get updates about news and research on Duchenne from Sarepta.

What is AMONDYS 45 (casimersen)?

AMONDYS 45 is used to treat patients with Duchenne muscular dystrophy (DMD) who have a confirmed mutation of the dystrophin gene that can be treated by skipping exon 45.

This indication is approved under accelerated approval based on an increase in dystrophin production in skeletal muscle observed in patients treated with AMONDYS 45. Continued approval for this indication may be contingent upon verification of a clinical benefit in confirmatory trials.

IMPORTANT SAFETY INFORMATION

Contraindications: Do not receive AMONDYS 45 if you are allergic to casimersen or any of the ingredients in AMONDYS 45. Serious allergic reactions to casimersen have included anaphylaxis, which may include difficulty breathing, tightness in the chest, and angioedema which may include swelling of the mouth, face, lips, or tongue.

Hypersensitivity Reactions: Serious allergic reactions, including angioedema and anaphylaxis, have occurred in patients who were treated with AMONDYS 45. Patients should seek immediate medical care should they experience signs and symptoms of allergic reactions. Your doctor will institute appropriate medical treatment which may include slowing, interrupting, or discontinuing the AMONDYS 45 infusion. Your doctor will monitor you until the condition resolves.

Kidney Toxicity and Monitoring: Damage to the kidneys was seen in animals who received casimersen. Although damage to the kidneys was not seen in clinical studies with AMONDYS 45, potentially fatal kidney damage has occurred with other drugs that work in a similar way. Your doctor may recommend urine and blood testing before starting treatment followed by urine testing every month and a blood test every 3 months to monitor your kidneys.

Adverse Reactions: Side effects occurring in at least 20% of patients treated with AMONDYS 45 and at least 5% more frequently than in patients who received an inactive intravenous (IV) infusion were (AMONDYS 45, placebo): upper respiratory tract infection (65%, 55%), cough (33%, 26%), fever (33%, 23%), headache (32%, 19%), joint pain (21%, 10%), and pain in mouth and throat (21%, 7%).

Other side effects that occurred in at least 10% of patients treated with AMONDYS 45 and at least 5% more frequently than patients who received an inactive IV infusion were: ear pain, nausea, ear infection, pain after injury, and dizziness and light-headedness.

What do I do if I have side effects?

Ask your healthcare provider for advice about any side effects that concern you.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088. You may also report side effects to Sarepta Therapeutics at 1-888-SAREPTA (1-888-727-3782).

The information provided here does not include all that is known about AMONDYS 45. To learn more, talk with your healthcare provider.

Before receiving this infusion, please see the full Prescribing Information for AMONDYS 45 (casimersen).