Know the Signs, Fight for Victory

Privacy Statement

At the Marfan Foundation, LDS, VEDS and GenTAC (collectively, the “Foundation”), we are committed to protecting your privacy. This Privacy Statement explains what personal information we collect from you, and how we use, share, and secure that personal information. It also explains your rights and options regarding our use of your personal information.

The Foundation reserves the right to change or update this Privacy Statement at any time. We encourage you to review the Privacy Statement whenever you access the websites in order to stay informed regarding our privacy practices.

If you are a resident of the United Kingdom (“UK”) or one of the countries located in the European Economic Area (“EEA”), please review the “Notice to Residents of the EEA and the UK” section below for your rights under the General Data Protection Regulation (“GDPR”) and the UK GDPR.

Our websites contain links to third-party websites. Please be advised that this Privacy Statement only addresses the collection, use, and disclosure of personal information by the Foundation and does not apply to your use of a third-party website. We have no control over and are not responsible for any personal information you may provide when browsing third-party websites; we encourage you to read the privacy policies on those websites before providing your personal information.

Personal Information That We Collect

We collect information, including personal information, in various ways and from different sources, depending on how you interact with us. “Personal information” includes any information that we collect about you that, alone or in combination with other information, can be used to identify you, such as a personal identifier or certain online identifiers. For the purpose of this Privacy Statement, personal information also includes “personal data” as such term is defined under the GDPR or the UK GDPR.

The categories of personal information that we collect from you depend on your interactions with us and may include the following:

  • When you enter into a transaction with us — e.g., register for an event, buy a product, or seek information — you may provide us with your contact information (e.g., your name, e-mail, address, telephone number, and other contact information) When you use payment cards to make purchases on our websites, we use a third party payment processor to process the payment to try to limit exposure of your payment card information. When you attend Foundation events, we may take photographs or make video recordings of you. In the event that we take photographs or make video recordings that include your personal information, will seek your consent.

Automatically Collected Information. When you visit our websites, our servers automatically collects the domain name from which you are visiting, as well as other information about your device, including 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 websites and better serve the community.

How We Use Your Personal Information

We use the personal information you provide us for the following purposes:

  • To (i) inform you of official local Foundation meetings organized by the Foundation or any approved local Foundation group, (ii) encourage support of, or participation in, the Foundation activities or those organized by any approved Foundation group (e.g., conferences, webinars, support groups, symposia, social gatherings, etc.), Foundation legislative work, or Foundation campaigns, or (iv) solicit donations.
  • To respond to, process, and fulfill any requests or orders you have submitted, and to notify you of your order status.
  • To provide personalized content and services in order to improve user experience, including for promotional purposes.
  • To comply with the law or in response to a subpoena, court order, law enforcement or government request or other legal process.
  • To monitor the effectiveness of the websites.
  • To protect the interests, rights, safety or property of the Foundation and users of the websites, and to combat fraud or criminal activity.
  • As otherwise required or permitted by applicable law.

What Personal Information We Disclose

We disclose your personal information to:

  • Our partners and vendors, including designated service providers.
  • Approved local Foundation groups.
  • With governmental and/or third parties when we have a good faith reason to believe that such disclosure is necessary to satisfy our legal obligations (e.g., in the case of a subpoena or warrant or similar process) or to defend our legal rights or property (e.g., if we decide to bring legal action against someone who may be violating our Terms and Conditions), or where such disclosure is otherwise required by law or by legal process.

Cookies and Similar Technologies

We use cookies and other tracking technologies when you use our websites, as further described in our Cookie Policy, which is available here: Cookie Policy

Do Not Track (“DNT”) Signals. DNT is a privacy preference that can be set in certain web browsers and provides the user with the opportunity to opt-out of tracking by websites. We currently do not respond to DNT or similar signals and our websites will continue to collect information about you even if your browser’s DNT functionality is activated.

Data Security

The security of your personal information is very important to us and we are committed to protecting the personal information we collect. We use commercially reasonable technical, physical, and other measures to protect your personal information. Despite these measures, no method of digital transmission or mode of digital storage is 100% secure, so we cannot guarantee the security of your personal information.

Your Choices and Rights

We provide users the opportunity to stop receiving communications from the Foundation. To request that you not receive future email communications from us, please send an e-mail to brandcomms@marfan.org. Please allow up to five business days for your request to be fulfilled.

Notice to Residents of the EEA and the UK

If you are a resident of the UK or a country located in the EEA, you have certain rights under the GDPR or the UK GDPR.

Legal Bases for Processing. We collect your personal information detailed above and rely on the following legal bases to process your personal information:

  • Consent. We collect personal information with your consent, such as when you voluntarily fill in the Sign Up for Our Latest News and Updates form on our websites or during registration for a Foundation event.
  • Legitimate interests. We use your personal information for our legitimate interests, such as to improve our products and services, and for promotional purposes.
  • Performance of a contract. We collect and use your personal information to perform the services for which you have contracted with us.
  • Compliance with legal obligations. We use your personal information to comply with legal or regulatory obligations that are applicable to us.

“Special Categories” Personal Data. Please note that we do not in the normal course of our interactions with website visitors collect “special categories” of personal information, as defined in GDPR and UK GDPR, which includes information about your racial or ethnic origin, political opinions, religious or philosophical beliefs, trade union membership, genetic data, biometric data, and data concerning health, sex life, and sexual orientation. However, if you are a member of the Foundation or otherwise seek services or information from the Foundation, you may provide us information about, for example, a Marfan diagnosis related to you or a friend or family member. In such cases, we process that data solely in connection with the purposes for which you provided it and with your consent, and we do not disclose such information to anybody outside the Foundation without your consent or as strictly necessary to comply with legal obligations or to establish, exercise or defend legal claims.
Data Subject Rights. Subject to certain conditions, if you are a resident of the EEA or the UK, you have the following rights regarding your personal information:

  • To request access to your personal information;
  • To correct inaccurate personal information that we maintain about you;
  • To erase your personal information, subject to certain exceptions under applicable laws;
  • To obtain a copy of your personal information from us;
  • To object to or restrict the processing of your personal information, subject to certain requirements; and
  • To complain to a data protection authority regarding the processing of your personal information.


Where you have given us valid consent to collect, use, and process your personal information, we will rely on your valid consent. In instances in which we have based our processing of your personal information on your consent, you have the right to withdraw your consent. In certain situations, we may continue to process your personal information after you have withdrawn consent and requested that we delete your personal information, if we have a legal basis to do so.

If you would like to exercise any of your rights under the GDPR or the UK GDPR, please contact us at brandcomms@marfan.org. To honor any requests, we may take steps to verify your identity. Please note that if you exercise certain rights, this may affect our ability to provide you with services. While we make reasonable efforts to accommodate your request, we may deny certain requests, to the extent allowed or required by applicable law.

To exercise your right to complain to a Data Protection Authority, if you are a resident of the European Union, you may file such a complaint with the Data Protection Authority in the country in which you are located. If you are located in the United Kingdom, you may contact the Office of the Information Commissioner in the United Kingdom at www.ico.org.uk, by telephone at +44 (0)303 123 1113, or by writing to this address: Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF United Kingdom.

Retention of Your Personal Information

We retain personal information we collect no longer than reasonably necessary to fulfill the purposes for which we collect personal information, or as otherwise required by law.

International Transfer of Your Personal Information

If you reside outside of the United States and use our websites or otherwise provide personal information to us, please be advised that your personal information will be transferred to and processed in the United States. By using our websites or submitting personal information to the Foundation, you acknowledge that you are transferring such information to and that such information is being processed in the United States for the purposes described in this Privacy Statement, which may provide a different level of privacy protection than the country in which you are located.

Questions and Contact Information

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


Email: brandcomms@marfan.org
Phone: 1-800-8MARFAN
Mail: The Marfan Foundation
22 Manhasset Avenue
Port Washington, NY 11050


Last Updated May 25, 2025.