Privacy Policy

Updated January 19, 2022

This privacy policy (the “Privacy Policy”) explains how CureDuchenne collects, uses, and in some circumstances discloses personal information you provide through using this site (the “Site”). Please read this Privacy Policy before using the site or submitting any personal information. Your use of the Site constitutes your acceptance of the Privacy Policy and the associated Terms of Use. CureDuchenne reserve the right to modify or amend this Privacy Policy at any time. It is CureDuchenne’ s practice to post any changes it makes this Privacy Policy on this page, and the date this Privacy Policy was last revised is identified at the top of this page. CureDuchenne encourage you to periodically review this Privacy Policy for the latest information on its privacy practices. CureDuchenne endeavors to notify you of any material changes to this Privacy Policy. CureDuchenne may notify you of these changes by email reminders, by notice on this site, or by other reasonable means.

CureDuchenne will ensure that all personal information disclosed by you and that is held by us will be: (i) processed lawfully, fairly, and in a transparent manner; (ii) collected for specified, explicit, and legitimate business purposes and not further processed in a manner that is incompatible with those legitimate business purposes; (iii) adequate, relevant and limited to what is necessary; (iv) kept in a form which permits identification of data subjects for no longer than is necessary; and (v) processed in a manner that ensures appropriate security of the personal data, including protection against unauthorized or unlawful processing and against accidental loss, destruction, or damage.

Note: The privacy practices set forth in this privacy policy are for this website only. If you link to other websites, please review the privacy policies posted at those sites.  Please review the Third-Party Site section below for further clarification.

Collection of Information
CureDuchenne may collect personally identifiable information including but not limited to first and last names, postal addresses, email addresses, and profession, when voluntarily submitted by our visitors. The information you provide is used for the legitimate business purposes of fulfilling your specific request and to create an account to access the Site. Except as set forth in this policy, this information is only used to fulfill your specific request, unless you give us permission to use it in another manner, for example to add you to one of our mailing lists.

Cookie/Tracking Technology

The Site may use cookie and analytic/tracking technology. Cookie and tracking technology are useful for tracking the number of visitors to the Site and understanding how visitors use the Site. Cookies can also help customize the Site for visitors. Personal information cannot be collected via cookies and other tracking technology, however, if you previously provided personally identifiable information, cookies may be tied to such information. Aggregate cookie and tracking information may be shared with third parties. In some jurisdictions, companies and organizations are not permitted to send cookies to the browser without the prior consent of the affected user. In this case, we will seek such consent.  This section and the following section assume that either the use of cookies is not restricted by applicable law, or if it is restricted that you have expressly consented to the use of cookies and related technologies.

Disclosure of Information
CureDuchenne may share information collected by the Site with governmental agencies or other companies assisting us in fraud prevention or investigation. CureDuchenne may do so when: (1) permitted or required by law; or, (2) trying to protect against or prevent actual or potential fraud or unauthorized transactions; or, (3) investigating fraud which has already taken place. The information is not provided to these governmental agencies or companies for marketing purposes. CureDuchenne may also disclose this information if CureDuchenne determines that disclosure is reasonably necessary to enforce the Site’s Terms of Use or protect the Site’s Users. Additionally, CureDuchenne may share personal information with its subsidiaries and affiliated entities, primarily for business and operational purposes. CureDuchenne reserves the right to disclose and transfer all information related to the Site including personal information collected to a subsequent owner, co-owner or operator of the Site or associated databases. CureDuchenne will not otherwise sell your information to third parties.

Commitment to Data Security
Your privacy is important to us. To prevent unauthorized access, maintain data accuracy, and support the correct use of information, CureDuchenne has put in place commercially reasonable organizational, technical and administrative measures to help protect against the loss, misuse and alteration of the information under its control. CureDuchenne seeks to ensure that contractors, service providers, and other third parties who work with CureDuchenne to support its business or otherwise make the Site available (including the software, applications and services provided on our website) protect the personal information that they store, access or obtain in connection with our services, including, when possible, through contractual obligations to safeguard the confidentiality of such information and use it only for the purposes for which it is disclosed to, or accessed by, them.

While CureDuchenne endeavors to protect the privacy of your account and other personal information held in its records, CureDuchenne cannot guarantee complete security. Unauthorized entry or use, hardware or software failure, and other factors, may compromise the security of user information. We are a United States based entity and our servers are located in the United States. By providing your information and using the Site, you explicitly consent to the transfer, processing, and storage of your information in the United States. If you do not wish for us to transfer your personal information to the United States, please contact us using the information in the “Privacy Contact Information” section below.

Third Party Sites
The Site may contain links to third-party websites. These linked sites are not under CureDuchenne’s control and CureDuchenne is not responsible for the privacy practices or the contents of any such linked site, or any link contained in any linked site. A link to a website’s content, banner ad or other type of advertisement does not constitute an endorsement by CureDuchenne, authorization or representation of affiliation with that third party, nor is it an endorsement of their privacy or information security policies or practices. This Privacy Policy is not applicable to the websites or content of any such third parties. CureDuchenne does not exercise control over third party websites or services. These other websites or services may place their own cookies or other files on your computer, collect data or solicit personal information from you and follow different rules regarding the use or disclosure of the personal information you submit to them. If you provide any personal information through any such third-party website, your transaction will occur on such third party’s website (not this Site) and the personal information you provide will be collected by, and controlled by the privacy policy of, that third party. CureDuchenne recommends that you familiarize yourself with the privacy policies and practices of any such third parties, which are not governed by this Privacy Policy.

California Residents

The California Consumer Privacy Act (CCPA) provides California consumers with the right to request access to their personal data, additional details about our information practices and deletion of their personal information (subject to certain exceptions).  California consumers also have the right to opt out of sales of personal information, if applicable.   We describe how California consumers can exercise their rights under the CCPA below.  Please note that you may designate an authorized agent to exercise these rights on your behalf by providing written materials demonstrating that you have granted the authorized agent power of attorney.  Please note that if an authorized agent submits a request on your behalf, we may need to contact you to verify your identity and protect the security of your personal information.  We will not fulfill your CCPA request unless you have provided sufficient information for us to reasonably verify you are the consumer about whom we collected personal information.  We will not discriminate against you if you choose to exercise your rights under the CCPA.

You may request, no more than twice in a twelve (12) month period, access to the specific pieces of personal data we have collected about you in the last twelve (12) months.  You may also request additional details about our information practices, including the categories of personal information we have collected about you, the sources of such collection, the categories of personal information we share for a legitimate business or commercial purposes, and the categories of third parties with whom we share your personal information. You may make these requests by contacting using the contact information provided below in the “Privacy Contact Information” Section below.   After submitting your request, please monitor your email for a verification email.  We are required by law to verify your identity prior to granting access to your data in order to protect your privacy and security.

You may request, no more than twice in a twelve (12) month period, transportable copies of your personal information that we have collected about you in the last twelve (12) months.  You may make these requests by contacting using the contact information provided below in the “Privacy Contact Information” Section.   After submitting your request, please monitor your email for a verification email.  We are required by law to verify your identity prior to granting access to your data in order to protect your privacy and security.

You may request that we delete the personal information we have collected about you.  Please note that we may retain certain information as required or permitted by applicable law.  You may make these requests by contacting us using the contact information provided below in the “Privacy Contact Information” Section below.  After submitting your request, please monitor your email for a verification email.  We are required by law to verify your identity prior to granting access to your data in order to protect your privacy and security.

California residents are entitled to ask us for a notice identifying the categories of personal information which we share with our affiliates and/or third parties for marketing purposes and providing contact information for such affiliates and/or third parties.

California requires operators of websites or similar services to make certain disclosures to users who reside in California regarding their rights:

•    Under California Law, a business that has an established business relationship with an individual, and has, within the immediately preceding calendar year, disclosed personal data that is primarily used for personal, family, or household purposes to a third party for the third party’s direct marketing purposes, must disclose to its California users, upon request, the identity of any such third party, along with the type of personal disclosed (“Shine the Light”).  You can contact CureDuchenne using the information found below in the Privacy Contact Section.  Under California law, CureDuchenne is only required to respond to a user’s request once during any calendar year;

•    Some browsers give individuals the ability to communicate that they wish not be tracked on the internet; California law requires that CureDuchenne discloses to users how requests are treated (“Do-No-Track). The Internet industry has not yet agreed on a definition of what “Do Not Track” means, how compliance with “Do Not Track” would be measured or evaluated, or a common approach to responding to a “Do Not Track” signal. Due to the lack of guidance, CureDuchenne has not yet developed features that would recognize or respond to browser initiated Do Not Track signals in response to California law.

EU/EEA Citizens

The EU General Data Protection Regulation (GDPR) grants individuals who are in the European Union and European Economic Area (EU/EEA) the certain rights, with some limitations. We will establish a system to enable and facilitate the exercise of data subject rights related to:

•         Information access;
•         Objection to processing;
•         Objection to automated decision-making and profiling;
•         Restriction of processing;
•         Data portability;
•         Data rectification; and
•         Data Erasure

If you would like to exercise above EU General Data Protection Regulation (GDPR) rights about your personal information we hold about you, please submit a written request to: or contact us using the information provided in the “Privacy Contact Information” section below. Our privacy team will examine your request and respond to you as quickly as possible.

Use of Site by Children
This Site may not be used by children under the age of 18 and CureDuchenne does not knowingly collect personal information from any individuals under age 18. If you become aware that a child has provided CureDuchenne with personal data, please contact CureDuchenne as indicated in the “Privacy Contact Information” section below. If CureDuchenne discovers that it has obtained personal information from a child under age 18, such personal information will be deleted.

All communications from this Site allow you to opt out of further mailings.

Privacy Contact Information

If you have any questions, concerns, or comments about this Privacy Policy you may contact
CureDuchenne using the information below:
By Email:

By Phone: (949) 872-2552

By mail: 1400 Quail Street, Suite 110,   Newport Beach, CA  92660