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 a 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.
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’s a program that may be able to help. Decode Duchenne offers 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 PTC Therapeutics.
Visit Decode Duchenne to learn more.
“My advice for other parents is to reach out, ask questions, and get support.”
–Holly, Zyler’s mom
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.
A doctor will need to interpret the test results to consider appropriate treatment options. Learn more about deletions.
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. How SareptAssist can help.