Privacy Policy

Last Updated: March 24, 2021

Please Read Carefully

This Privacy Policy describes the information Cure Duchenne (“CureDuchenne”) collects about you, including though our website, how we use and share that information, and the privacy choices we offer. This policy applies to information we collect when you access or use our website or when you otherwise interact with us. We 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.

Changes to this Privacy Policy

We may change this Privacy Policy from time to time. If we make changes, we will notify you by posting the updated policy on our website and revising the “Last Updated” date above. We encourage you to review the Privacy Policy whenever you use our website or otherwise interact with us to stay informed about our information practices and about ways you can help protect your privacy. CureDuchenne will use commercially reasonable 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.

Confidentiality of Health Information

CureDuchenne understands that health information about you and your health is personal. We support your privacy and make sure that the transmittal and use of your information complies with all laws. In this regard, we comply with the Health Insurance Portability and Accountability Act of 1996 (“HIPAA”), the Health Information Technology for Economic and Clinical Health Act (“HITECH Act”), and California’s Confidentiality of Medical Information Act (“CMIA”), by entering into Business Associate Agreements (“BAA”) when applicable to ensure that your protected health information is appropriately safeguarded.

Use of Website

Your access to and use of our website are subject to certain terms and conditions, which are set forth in our Terms of Use.

Collection of Information

Information You Provide

We collect information you voluntarily provide, such as when you email us, subscribe to our newsletter, make a purchase, or fill out forms on our website or otherwise. We may collect, but are not limited to collecting, the following information: your name, gender, email address, mailing address, phone number, date of birth, social security number, employer information, doctor information, Duchenne related mutation, and medications and vitamins you are currently taking.

Information We Collect from Your Use of the Website

We collect information about you when you use our website, including, but not limited to the following:

• Device Information. We may automatically collect certain information about the computer or devices (including mobile devices) you use to access the website. For example, we may collect and analyze information such as (a) IP addresses, geolocation information (as described in the next section below), unique device identifiers and other information about your mobile phone or other mobile device(s), browser types, browser language, operating system, the state or country from which you accessed the website; and (b) information related to the ways in which you interact with the website, such as: referring and exit pages and URLs, platform type, the number of clicks, domain names, landing pages, pages and content viewed and the order of those pages, the amount of time spent on particular pages, the date and time you used the website, the frequency of your use of the website, error logs, and other similar information. As described further below, we may use third-party analytics providers and technologies, including cookies and similar tools, to assist in collecting this information.
• Location Information. We may collect different types of information about your location, including general information (e.g., IP address, zip code) and more specific information (e.g., GPS-based functionality on mobile devices used to access the website), and may use that information to customize the website with location-based information, advertising, and features. For example, if your IP address indicates an origin in Los Angeles, the website may be customized with Los Angeles-specific information and advertisements. In order to do this, your location information may be shared with our agents, vendors or advertisers. If you access the website through a mobile device and you do not want your device to provide us with location-tracking information, you can disable the GPS or other location-tracking functions on your device, provided your device allows you to do this. See your device manufacturer’s instructions for further details.
• Cookies and Other Electronic Technologies. We may use the tools outlined below in order to better understand users. As we adopt additional technologies, we may also gather additional information through other methods. 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.
• Cookies: “Cookies” are small computer files transferred to your computing device that contain information such as user ID, user preferences, lists of pages visited and activities conducted while using the website. We use Cookies to help us improve or tailor the website by tracking your navigation habits, storing your authentication status so you do not have to re-enter your credentials each time you use the website, customizing your experience with the website, and for analytics and fraud prevention.

We may use a type of advertising commonly known as interest-based or online behavioral advertising. This means that some of our business partners use Cookies to display CureDuchenne ads on other websites and services based on information about your use of the website and on your interests (as inferred from your online activity). Other Cookies used by our business partners may collect information when you use the website, such as the IP address, mobile device ID, operating system, browser, web page interactions, the geographic location of your internet service provider, and demographic information such as gender and age range. These Cookies help CureDuchenne learn more about our users’ demographics and internet behaviors.

For more information on cookies, visit http://www.allaboutcookies.org.

• Web Beacons: “Web Beacons” (a.k.a. clear GIFs or pixel tags) are tiny graphic image files imbedded in a web page or email that may be used to collect anonymous information about your use of our website, the websites of selected advertisers, and the emails, special promotions or newsletters that we send you. The information collected by Web Beacons allows us to analyze how many people are using the website, using the selected advertisers’ websites or opening our emails, and for what purpose, and also allows us to enhance our interest-based advertising.
• Website Analytics: We may use third-party website analytics services in connection with the website, including, for example, to register mouse clicks, mouse movements, scrolling activity and text that you type into the website or mobile application. These website analytics services generally do not collect personal information unless you voluntarily provide it and generally do not track your browsing habits across websites which do not use their services. We use the information collected from these services to help make the website easier to use.
• Mobile Device Identifiers: Mobile device identifiers are data stored on your mobile device that may track mobile device and data and activities occurring on and through it, as well as the applications installed on it. Mobile device identifiers enable collection of personal information (such as media access control, address and location) and traffic data. Mobile device identifiers help CureDuchenne learn more about our users’ demographics and internet behaviors.

Information from Third Parties

We may obtain additional information about you from third parties such as marketers, partners, researchers, and others. We may combine information that we collect from you with information about you that we obtain from such third parties and information derived from any other subscription, product, or service we provide.

Aggregate or De-identified Data

We may aggregate and/or de-identify information collected by the website or via other means so that the information is not intended to identify you. Our use and disclosure of aggregated and/or de-identified information is not subject to any restrictions under this Privacy Policy, and we may disclose it to others without limitation for any purpose, in accordance with applicable laws and regulations.

Use of Information

We use the information that we collect for the following legitimate business purposes:

• For the purposes for which you provided the information (e.g., to send brochures to you, to process your transaction, to connect you with vendors when requested by you, who may provide you with information about products and services, and to respond to your inquiries;
• To personalize your experience with the website by informing you of products, programs, events, services, and promotions of CureDuchenne, our affiliates, our partners and/or third parties that we believe may be of interest to you (See the “Opt-In Policy” below);
• To provide, maintain, administer, improve, or expand the website, perform business analyses, or for other internal purposes to support, improve or enhance our business, the website, and other products and services we offer;
• To administer online surveys or online sweepstakes or contests in which you choose to participate, and to provide notifications or deliver requested materials related to the survey, sweepstakes or contest;
• To fulfill your purchase from us, including, to process your payments, communicate with you regarding your purchase or provide you with related customer service;
• To contact you when necessary or requested;
• To customize and tailor your experience of the website;
• To send emails and other communications that display content that we think will interest you and according to your preferences;
• To send you news and information about our website and services;
• To track and analyze trends and usage in connection with our website;
• To better understand who uses the website and how we can deliver a better user experience;
• To combine information received from third parties with the information that we have from or about you and use the combined information for any of the purposes described in this Privacy Policy;
• To use statistical information that we collect in any way permitted by law, including from third parties in connection with their commercial and marketing efforts;
• To prevent, detect, and investigate security breaches, fraud, and other potentially illegal or prohibited activities;
• To enforce the legal terms that govern your use of the website;
• To protect our rights or property;
• To administer and troubleshoot the website; and
• For any other purpose disclosed to you in connection with our website or services.

We may use third-party service providers to process and store personal information in the United States and other countries.

Sharing of Information

In general, we will not sell, share or rent information about you in ways different from what is disclosed in this statement. We may share personal information about you as follows:

• With third parties to provide, maintain, and improve our services and website, including service providers who access information about you to perform services on our behalf;
• With our affiliates and partners so that they may use such information for the purposes described in this Privacy Policy;
• With our affiliates, partners or other third parties to allow them to contact you regarding products, programs, services, and promotions that we and/or they believe may be of interest to you (See the “Opt-In Policy” below);
• With third party sponsors of sweepstakes, contests or similar promotions to administer those activities and provide notifications or deliver requested materials related to the survey, sweepstakes or contest;
• In connection with, or during the negotiation of, any merger, sale of company stock or assets, financing, acquisition, divestiture or dissolution of all or a portion of our business (but only under non-disclosure and confidentiality agreements and protections);
• If we believe that disclosure is reasonably necessary to comply with any applicable law, regulation, legal process or governmental request; to enforce applicable user agreements or policies; to protect the security or integrity of our website or services; and to protect us, our users or the public from harm or illegal activities; and
• With your consent.

We may also share aggregated, non-personally identifiable information with third parties.

Opt-In Policy

When you supply us with personally identifiable information in connection with your use of the website, you may be asked to indicate whether you are interested in receiving information from us about our product and service offerings and if you would like us to share personally identifiable information about you with our affiliates, partners or other third parties for their marketing purposes. If you do choose to opt-in, you will receive such communications and/or we will share your information in accordance with your “opt-in” consent.

You may, of course, choose not to receive additional marketing information from us or choose not to allow our sharing of your personally identifiable information as follows: At any time, you can follow a link provided in our marketing-related email messages (but excluding e-commerce confirmations and other administrative emails) to opt out from receiving such communications; or at any time, you can contact us in accordance with the “Contact Us” section below to opt out from receiving such communications.

If you decide to contact us to change your contact preferences to opt out of receiving communications from us, please specify clearly which of the following choices you are opting out of: (a) Receiving marketing communications from us; (b) Allowing us to share personally identifiable information about you with our affiliates and partners for their marketing purposes; and/or (c) Allowing us to share personally identifiable information about you with other third parties for their marketing purposes.

We will endeavor to implement your requested change as soon as reasonably practicable after receiving your request. Please be aware that your requested change will not be effective until we implement such change. Please note that if you choose not to allow our sharing of your personally identifiable information, we are not responsible for removing your personally identifiable information from the databases of third parties with which we have already shared your personally identifiable information as of the date that we implement your request. If you wish to cease receiving marketing-related e-mails from these third parties, please contact them directly or utilize any opt-out mechanisms in their privacy policies or marketing-related e-mails.

Please note that if you do opt-out of receiving marketing-related messages from us, we may still send you important administrative messages. You cannot opt-out from receiving these administrative messages. We reserve the right, from time to time, to contact former customers or users of the website for administrative purposes or in order to comply with applicable laws, rules or regulations.

Social Media and Third Party Platforms

Certain sections or functionalities on our website may permit you to share information on third party social media sites or platforms such as Facebook, Instagram, LinkedIn, Twitter, or other similar sites (collectively, “Social Media Sites”). CureDuchenne does not own or control such Social Media Sites, and posting your information on Social Media Sites is subject to the third party’s privacy policy and other legal terms, which may not provide privacy protections with which you agree. CureDuchenne is not responsible for any act or omission of any Social Media Site, nor are we responsible for the consequences of your choosing to share your information on Social Media Sites.  If you post to any of Cure Duchenne’s social networking pages on third-party websites, you are providing information to the public and do so at your own risk. 

Security, Storage and Transfer

We take reasonable measures, including administrative, technical, and physical safeguards, to help protect personal information from loss, theft, misuse, unauthorized access, disclosure, alteration, and destruction. Unfortunately, no data transmission over the Internet can be guaranteed to be 100% secure. As a result, while we strive to protect your personal information, CureDuchenne cannot ensure or warrant the security of any information you transmit to us or from our online products or services, and you do so at your own risk.

We are a United States based company and our servers are located in the United States. By providing your information and using the Website, 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 “How to Contact Us” section below.

Your Privacy Choices

How You Can Access and Update Your Information

You may update or correct information about yourself at any time or by emailing us at info@cureduchenne.org.

Cookies

Most web browsers are set to accept cookies by default. If you prefer, you can usually choose to set your browser to remove or reject cookies; however, our website may not function properly if you do so.

Options for Opting out of Cookies and Mobile Device Identifiers

If you are interested in more information about interest-based advertising and how you can generally control cookies from being put on your computer to deliver tailored advertising, you may visit the Network Advertising Initiative’s Consumer Opt-Out link, the Digital Advertising Alliance’s Consumer Opt-Out link or TRUSTe’s Advertising Choices Page to opt-out of receiving tailored advertising from companies that participate in those programs.

Please note that even after opting out of interest-based advertising, you may still see CureDuchenne’s advertisements that are not interest-based (i.e., not targeted toward you). Also, opting out does not mean that CureDuchenne is no longer using its tracking tools—CureDuchenne still may collect information about your use of the website even after you have opted out of interest-based advertisements and may still serve advertisements to you via the website based on information it collects via the website.

How CureDuchenne Responds to Browser “Do Not Track” Signals

We are committed to providing you with meaningful choices about the information collected on our website for third-party purposes, and that is why we provide above the Network Advertising Initiative’s “Consumer Opt-out” link, Digital Advertising Alliance’s Consumer Opt-Out Link, and TRUSTe’s Advertising Choices page. However, we do not recognize or respond to browser-initiated Do Not Track signals, as the Internet industry is currently still working on Do Not Track standards, implementations and solutions. For more information about DNT signals, visit http://allaboutdnt.com.

Links to Other Websites

This website may contain links to other websites and those websites may not follow the same privacy practices as CureDuchenne. We are not responsible for the privacy practices of third party websites. We encourage you to read the privacy policies of such third parties to learn more about their privacy practices.

Children

CureDuchenne does not knowingly collect or maintain personally identifiable information from persons under 13 years of age without verifiable parental consent, and no part of the website or services are directed at persons under 13. If you are under 13 years of age, then please do not use the website or services. If CureDuchenne learns that personally identifiable information of persons less than 13 years of age has been collected without verifiable parental consent, then CureDuchenne will take the appropriate steps to delete this information. To make such a request, please contact us at info@cureduchenne.org.

Your Privacy Rights

Individual Rights

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

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 “How to Contact Us” 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 “How to Contact Us” 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 “How to Contact Us” 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.

Exercising Your Rights

If you would like to exercise above EU General Data Protection Regulation (GDPR) rights about your personal information we hold about you, or exercise any other data subject right available to you under California Consumer Privacy Act (CCPA), please submit a written request to: info@cureduchenne.com or contact us using the information provided in the “How to Contact Us” section below. Our privacy team will examine your request and respond to you as quickly as possible.

No Rights of Third Parties

This Privacy Policy does not create rights enforceable by third parties.

How to Contact Us

Please contact us with any questions or concerns regarding this Privacy Policy at:

CureDuchenne
100 Bayview Circle, Ste. 5600
Newport Beach, CA  92660
Phone: (949) 872-2552
Email: info@cureduchenne.org