Know the Signs, Fight for Victory

Privacy Statement

At The Marfan Foundation (the Foundation), we are committed to protecting your privacy. This Privacy Statement explains what data we collect from you, and how we use, share, and secure that data. It also explains your rights and options regarding our use of the data.

We firmly believe that electronic security and privacy are necessary for the continued success of the Internet. In support of this, we only use the personal information that you provide to create a more personalized and enjoyable experience for you, monitor the effectiveness of our site, and to respond to your questions and requests. We may sometimes share your information with trusted partners and service providers, as well as local chapters or support groups, but only to help us serve you and on terms that prohibit our partners from using the data for any other purpose.

What information do we collect and how do we use it?

When you enter into a transaction with us (e.g., register for an event, buy a product, or seek information), you provide certain information that we use in various ways. In particular:

  • Our site’s forms may require you to give us contact information (e.g., your name, e-mail and address), as well as payment information (e.g., credit card number and expiration date). This allows us to process and fulfill your order and to notify you of your order status.
  • We also use the contact information from these registration and survey forms to send you information about other Foundation programs or events. As discussed below in the “Your Choices and Rights” section, you may opt-out of receiving these mailings.
  • We also use the information you submit during registration is used to provide personalized content and services. We may also use this information in order to generate aggregate reports that help us determine how to improve our users’ experience.

When you visit our website, our server automatically records domain name and standard anonymous information about the operating system and Web browser you are using, as provided by your Web browser. This automatically collected information is used for statistical purposes to help us manage our site and better serve the community, but it does not identify you in any way. For more information about this, please see the section below on “Cookies.”

What information do we share?

The Foundation does not rent or sell your information to any third parties for their own use. We may sometimes use trusted partners and vendors as part of our efforts to serve you; when we do, we use binding contracts that prohibit these parties from using the data for any reason other than the purpose for which we shared it.

If requests for information come to us from a local Foundation chapter or support group/network, a cooperative effort is made to evaluate the nature of the request and provide only the information that is actually needed. All local Foundation chapters or support groups/networks are bound to maintain the privacy of information reserved by the terms of a written privacy agreement.

We may add your name and email address to The Marfan Foundation mailing list. The mailing list may be shared with The Marfan Foundation chapters, established Support Groups and local Community Groups. Such local groups may use the mailing list to (i) inform you of official local Foundation meetings, (ii) solicit membership in the approved local Foundation group, (iii) encourage support of, or participation in, The Marfan Foundation activities (e.g., the Annual Conference), The Marfan Foundation legislative work or The Marfan Foundation campaigns, or (iv) solicit dues for the local chapter. We believe that this sharing will benefit you by ensuring that you get relevant information from trusted sources.

The Foundation may disclose user information to the government and/or third parties when we have reason to believe that disclosure of such information is necessary to identify or bring legal action against someone who may be violating our Terms and Conditions or otherwise causing harm to the Foundation or anyone who could be victimized by such activities, and where otherwise required by law or by legal process.


“Cookies” are small files that are stored by your browser on your device’s hard drive. Most web browsers automatically accept cookies, but you can usually adjust your browser to prevent them. This could limit your ability to use certain features on our site, however.

Our site uses cookies to uniquely identify users’ machines so that we can monitor site usage, traffic and trends. We also use cookies to enable features such as keeping track of the contents of a shopping cart or helping to deliver more personalized content. Our cookies do not contain any personally identifying information.


The security of your personal information is very important to us and we are committed to protecting the information we collect. We use commercially reasonable technical, physical, and other measures to protect your data. For example, our website uses firewalls and has security measures in place at its physical facilities to protect against loss, misuse, or alteration of information that we have collected from you at our website. This includes use of Secure Sockets Layers (SSL) for processing contributions and library orders securely. SSL is the proven standard for secure Web messaging transactions.

Furthermore, all of the customer transactional data we collect is protected against unauthorized access with the use of digital certificates. Digital certificates for the Foundation are issued by GeoTrust, a trusted provider. To learn more about our online security, simply click the “security” icon (usually a padlock) in your browser window.

Despite these measures, we must remind you that no method of digital transmission or mode of digital storage is 100 percent secure, so we cannot guarantee the security of your information.

Your Choices and Rights

Our site provides users the opportunity to opt-out of receiving communications from the Foundation. To request that you not receive particular communications, please send an e-mail to Please allow up to five business days for your request to be fulfilled.

In certain jurisdictions, such as the European Union, you may have certain additional rights with respect to the personal data we have about you. For example, you may have a right to request access to the data, to correct any inaccuracies, to port the data to other providers, or to have the data erased. These rights are not absolute – e.g., you may request that we erase your personal data, but we may have legal obligations that require us to retain that data – but we will work fulfill your request consistent with the law. To object to any processing, please follow the “opt-out” procedures described above, or contact us at the email address below. For any other requests, please contact us at


If you have any questions about this Statement, you may contact The Marfan Foundation via phone, email or postal mail:

Phone: 1-800-8MARFAN
Mail: The Marfan Foundation
22 Manhasset Avenue
Port Washington, NY 1105

The Foundation reserves the right to change this policy at any time. Our privacy policy will be kept up to date and clearly posted on our website.

Last Updated May 24, 2018.