Privacy Policy

Effective date: March 8, 2023 

The Genetic Cardiomyopathy Awareness Consortium (GCAC), led by the DCM [Dilated Cardiomyopathy] Foundation (also “us”, “we”, or “our”), operates the website found at https://www.geneticcardiomyopathy.org  (the “Website”).

The statement on this page (our “Privacy Policy”) informs you of our policies and practices regarding the collection, use, and disclosure of personal data and options you have associated with that data when you use our Website. For purposes of this Privacy Policy, and our associated Terms of Use , which govern access to and use of the Website, “you,” “your” and “user(s)” refer to the person(s) accessing or using the Website.

Generally, we use the data we receive and collect to provide and improve this Website and to communicate back with visitors who provide us their contact information. By accessing or using the Website, you accept and agree to be bound by the Terms of Use and this Privacy Policy, including the collection and use of information as set forth herein.

Information Collection and Use

We collect several different types of information for various purposes to provide and improve our Website to you.

Types of Data Collected

Personal Data

While using our Website, we may ask you to provide us with certain personally identifiable information that can be used to identify and/or contact you (“Personal Data”). Personal Data may include, but is not limited to:

  • Email Address
  • First Name and Last Name
  • Phone Number
  • Cookies and Usage Data

Usage Data

We may also collect information on how the Website is accessed and used (“Usage Data”). This Usage Data may include information such as your computer’s Internet Protocol address (e.g. IP address), browser type, browser version, the pages of our Website that you visit, the time and date of your visit, the time spent on those pages, unique device identifiers and other diagnostic data.

Tracking & Cookies Data

We use web cookies (“Cookies”) and similar tracking technologies to track the activity on our Website and hold certain information.

Cookies are files with small amount of data that may include an anonymous unique identifier. Cookies may be sent to your browser from the Website and stored on your device. Tracking technologies like beacons, tags, and scripts may also be used to connect your computer with stored information about your prior activity on the Website, including searches and preferences, both within the same visit and from one visit to the next, in order to collect and track information and to help us to analyze and improve our Website.

The “help” portion of the toolbar on most browsers will tell you how to prevent your browser from accepting new Cookies, how to have the browser notify you when you receive new Cookies or how to disable Cookies altogether. You can instruct your browser to refuse all Cookies or to indicate when a Cookie is being sent. If you reject Cookies from the Website, however, you may not be able to use some portions or features of our Website and some parts may not function fully when you view them. The Website does not control and does not guarantee the effectiveness of browser-based tools for managing Cookies.

Examples of Cookies we use:

  • Session Cookies. We use Session Cookies to operate our Website.
  • Preference Cookies. We use Preference Cookies to remember your preferences and various settings.
  • Security Cookies. We use Security Cookies for security purposes.

Use of Data

The GCAC and DCM Foundation use the collected data for various purposes:

  • To provide and maintain the Website
  • To notify you about changes to our Website
  • To compile lists of users with whom we may communicate via email and/or digital newsletter, for example
  • To allow you to participate in interactive features of our Website when you choose to do so
  • To monitor the usage of the Website
  • To enable analysis that allows us to improve the Website
    • In particular, we may use Google Analytics to optimize our Website based on the traffic we receive. See below.
  • To detect, prevent and address technical issues

Transfer Of Data

Your information, including Personal Data, may be transferred to and maintained on computers located outside of your state, province, country or other governmental jurisdiction where the data protection laws may differ from those of your home jurisdiction.

If you are located outside United States and choose to provide information to us, please be aware that such information, including Personal Data, will be transferred to and processed in the United States.

By using the Website, you agree to the provisions of this Privacy Policy, and the transfer and processing of your Personal Data as provided herein.

How to Access, Correct and Update Your Information

If you wish to access information that you have submitted through this Website or to request the correction of any inaccurate information you have submitted through this Website, please contact us via email at info@geneticcardiomyopathy.org

Security

The GCAC and DCM Foundation are committed to data security.  We use industry-standard security techniques on the Website to help protect against the loss, misuse or alteration of information collected from you.  However, while we strive to protect your Personal Data, we cannot guarantee the absolute security of information you transmit to us.  In this regard, we urge you to take every precaution to protect your Personal Data while you are using the Internet.  At a minimum, we encourage you to make sure that you are using a secure browser as you surf the Internet.

The GCAC and DCM Foundation employ commercially reasonable measures to protect your Personal Data and see that it is treated securely and in accordance with this Privacy Policy.  We will not transfer your Personal Data to third parties without notice.

Service Providers

We may engage third parties to host or serve our Website, to provide certain services or features on the Website on our behalf, to perform Website-related maintenance or support services or to assist us in analyzing how our Website is used (collectively, “Service Providers”).

Such Service Providers may have access to your Personal Data in order to perform these tasks on our behalf, including as described herein.  They are not authorized by us to disclose or use it for other purposes.

Analytics

We may use a third-party Service Provider like Google Analytics to monitor and analyze the use of our Website.  Google Analytics is a web analytics service offered by Google that tracks and reports website traffic. Google uses the data collected to track and monitor the use of our Website. This data is shared with other Google services. Google may use the collected data to contextualize and personalize the ads of its own advertising network.

You can opt-out of having your activity on the Website made available to Google Analytics by installing the Google Analytics opt-out browser add-on. The add-on prevents the Google Analytics JavaScript (ga.js, analytics.js, and dc.js) from sharing information with Google Analytics about visits activity.

To learn more about Google Analytics, please visit:  www.google.com/policies/privacy/partners.  For more information on the privacy practices of Google, generally, please visit the Google Privacy & Terms web page: https://policies.google.com/privacy?hl=en

Links to Other Sites

Our Website may contain links to other sites that are not operated by us. If you click on such a third party link, you will be directed to that third party’s site. While we seek to link only to sites that share our high standards and respect for privacy, we are not responsible for the privacy or security practices employed by other sites.  We advise you to review and understand the privacy policy of every site you visit.

We have no control over and assume no responsibility for the content, privacy policies or practices of any third party sites or services.

Children’s Privacy

Our Website does not knowingly solicit or collect personal information online from individuals under the age of 18 without prior verifiable parental consent. If the GCAC or DCM Foundation learns that an individual under the age of 18 has submitted Personal Data online without parental consent, it will take all reasonable measures to delete such information from its databases and not to use such information for any purpose (except where necessary to protect the safety of the child or others as required or allowed by law).  If you become aware of any Personal Data we have collected from an individual under age 18, please contact us at info@geneticcardiomyopathy.org.

Changes to This Privacy Policy

We may update our Privacy Policy from time to time, including as we add new features, laws change and industry privacy and security practices evolve. We will notify you of any changes by posting the new Privacy Policy on this page with an updated “effective date” at the top.

Please review this Privacy Policy periodically for any changes, which are effective when they are posted on this page.

Contact Us

If you have any questions about this Privacy Policy, please contact us at info@geneticcardiomyopathy.org.

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