Last Reviewed: December 2020


Sarepta Therapeutics, Inc. ("Sarepta", "Company" or "We") respects your privacy and is committed to protecting it through our compliance with this policy. This policy describes the types of information we may collect from you or that you may provide when you visit, or any social media site, mobile sites, or online application owned and/or operated by the Company, including any content, functionality and services offered on or through these sites or channels (our "Websites") and our practices for collecting, using, maintaining, protecting and disclosing that information.

This policy applies to personal (i.e., individually identifiable) and other information we may collect:

This policy does not apply to information collected by:

Please read this policy carefully to understand our policies and practices regarding your information and how we will treat it. If you do not agree with our policies and practices, your choice is not to use our Websites or register for the services and information we offer. By accessing or using our Websites, you agree to this privacy policy.

By submitting your information on any of our Websites, you are consenting to your information being sent to Sarepta in the United States for the purposes described in this Privacy Policy. Please note that the laws of the United States pertaining to the use and protection of personal information may differ from that of other countries.


It is our policy to post any changes we make to our privacy policy on this page. If we make material changes to how we treat our users’ personal information, we will notify you by email to the primary email address specified in your account and/or through notices on our Websites. The date the privacy policy was last revised is identified at the top of the page. You are responsible for ensuring we have an up-to-date active and deliverable email address for you, and for periodically visiting our Websites and this privacy policy to check for any changes. Your continued use of our Websites after we make changes to our privacy policy is deemed to be acceptance of those changes, so please check the policy periodically for updates.


No one under age 13 may provide information on our Websites. Our Websites are not directed at children under 13. If you are under 13, and would like to access our Websites and the information and services we provide, please consult your parent or guardian and ask him or her to register or use our Website features on your behalf. If you believe we have any information from or about a child under 13 without parental or guardian consent, please contact us at so that we may identify and delete that information.


We collect several types of information from and about users of our Websites, including:

We collect information about you:

Information Collected Automatically

The information about you that we collect automatically does not identify you personally, but rather only by reference to the device you use to access our Websites. This information tells us about your usage of our Websites, which helps us to improve our Websites and to deliver a better and more personalized service to you. By enabling us to take into account your Website usage patterns and preferences, this information helps us to customize our Websites according to your individual interests, to speed up your searches, and to recognize you when you return to our Websites.

The technologies we use for this automatic data collection may include:

Although the information we collect automatically does not personally identify you, we may link that information to information that does personally identify you that we otherwise collect as described in this policy.

Third-party Use of Cookies and Other Tracking Technologies

Some content or applications, including advertisements on Websites such as social medial websites, are served by third-parties, including advertisers, ad networks and servers, content providers and application providers. These third parties may use cookies alone or in conjunction with web beacons or other tracking technologies to collect information about you when you use our Websites. The information they collect may be associated with your personal information or they may collect information, including personal information, about your online activities over time and across different websites and other online services. They may use this information to provide you with interest-based (behavioral) advertising or other targeted content.

We do not control these third parties' tracking technologies or how they may be used. If you have any questions about an advertisement or other targeted content, you should contact the responsible advertiser or content provider directly.


We use information that we collect about you or that you provide to us, including any personal information:

Some of our Websites or forms in which we collect information from you, will have an “Opt-In” option for you to allow Sarepta and companies working on its behalf to communicate with you regarding information and services that may be available to you. If you register for one of our Websites, we may provide you with information or services consistent with the information you provide. For example, if you identify yourself as a parent of a child with Duchenne muscular dystrophy (DMD), we may ask you to provide medical information such as the genetic mutation responsible for your child’s disorder. We will use this and other information you may provide to offer you relevant information about DMD, opportunities to participate in clinical trials, products and services, or other information.


Sarepta does not share personally identifiable information with any unaffiliated third party for such third party’s own marketing purposes. We may disclose aggregated information about our users, and other information that does not identify any individual user, without restriction.

We may disclose personal information that we collect as described in this privacy policy:

We may also disclose your personal information:


We strive to provide you with reasonable choices regarding the our collection and use of information about you. For example, you may: (1) choose not to provide personal information on our Websites, (2) set your browser preferences and use web tools available to block the cookies sent in connection with your use of our Websites, (3) follow the instructions to unsubscribe from our services included on our Websites and the communications sent to you, and/or (4) email a request to unsubscribe from our services to


You may send us an e-mail at to request access to or the correction or deletion of any personal information that you have provided to us. We may not accommodate a request to change information for several reasons, including if we believe the change would violate any law or legal requirement or cause the information to be incorrect. Proper access to and use of information provided on our Websites is governed by our Terms of Use.

Kindly note that, if you delete your User-Generated Information from any of our Website, copies of your User-Generated Information may remain viewable in cached and archived pages, or might have been copied or stored by other Website users. Proper access and use of information provided on our Website, including User-Generated Information, is governed by our Terms of Use.


We have implemented measures designed to secure your personal information from unauthorized access, use, alteration and disclosure. All information you provide to us is stored on our secure servers behind firewalls.

Unfortunately, the transmission of information via the internet is not completely secure. Although we do our best to protect your personal information, we cannot guarantee the security of your personal information transmitted to our Websites. Any transmission of personal information is at your own risk. We are not responsible for circumvention of any privacy settings or security measures contained on our Websites.


To ask questions or comment about this privacy policy and our privacy practices, contact us at:

Sarepta Therapeutics
Attn: Corporate Communications
215 First Street
Cambridge, MA 02142

WHAT IS VYONDYS 53 (golodirsen)?

VYONDYS 53 is used to treat patients with Duchenne muscular dystrophy (DMD) who have a confirmed mutation in the dystrophin gene that can be treated by skipping exon 53.

This indication is approved under accelerated approval based on an increase in dystrophin production in skeletal muscle observed in patients treated with VYONDYS 53. Continued approval for this indication may be contingent upon verification of a clinical benefit in confirmatory trials.


Allergic reactions, including rash, fever, itching, hives, and inflammation and/or peeling of the skin have occurred in patients who were treated with VYONDYS 53. Seek immediate medical care if signs and symptoms of allergic reactions occur.

Damage to the kidneys was seen in animals who received golodirsen. Although damage to the kidneys was not seen in clinical studies with VYONDYS 53, 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 that have occurred in at least 20% of patients treated with VYONDYS 53 and more often than in patients who received an inactive intravenous (IV) infusion were headache (41%, 10%), fever (41%, 14%), fall (29%, 19%), pain in the abdomen (27%, 10%), infection of the nose and throat (27%, 14%), cough (27%, 19%), vomiting (27%, 19%), and nausea (20%, 10%).

Other adverse reactions that occurred in greater than 5% of patients treated with VYONDYS 53 and more often than in patients who received an inactive IV infusion were pain at the IV site, back pain, pain, diarrhea, dizziness, stretch or tear in a ligament, bruising, flu, pain in the mouth and throat, stuffy or runny nose, scrapes or scratches of the skin, ear infection, seasonal allergy, fast heartbeat, reactions related to the IV catheter site, constipation, and broken bones.

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

Please see the full Prescribing Information for VYONDYS 53 (golodirsen).