Privacy Statement | The Marfan Foundation

Privacy Statement

At The Marfan Foundation (the Foundation), we are committed to protecting your privacy. 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 respond to your questions and requests.

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.

Those of you who volunteer information about yourself online by filling out an interactive form on our website (e.g., the order or donation form) or offline may be interested to know the Foundation’s Information Sharing Policy, which is as follows:

  • All your information provided during registration is only used to provide personalized content and services. Any account information you supply will be used only to process requested commerce transactions or to contact you regarding a specific transaction. The Foundation may also use this information in order to generate aggregate reports that help us determine how to improve our users’ experience.
  • The Foundation will not disclose your user information to any outside organization without your consent, and does not rent or sell your information. 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. 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.
  • Unless you choose to opt out in accordance with the choice/opt-out procedures below, 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 may also use your contact information to e-mail you newsletters that inform you of upcoming events within the Foundation.

The security of your personal information is very important to us and we are committed to protecting the information we collect. http://www.marfan.org 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.

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.

 

WEB PRIVACY POLICY

About Your Privacy

Your privacy is important to us. The following explains The Marfan Foundation’s (the Foundation) online information practices and the choices you can make about the way your information is collected and used. Should you have a question relating to our privacy policy and practices— or wish to review or correct any personal information we may have on file for you—please contact us: by:

Email: webmaster@marfan.org

Phone: (516) 883-8712
Fax: (516) 883-8040

Mail:
The Marfan Foundation
22 Manhasset Avenue
Port Washington, NY 11050

What information do we collect? 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), we may need to know specific information in order to process your request. Our site’s forms may require you to give us contact information (e.g., your name, e-mail and address). We may use the contact information from these registration and survey forms to send you information about other Foundation programs or events. You may opt-out of receiving future mailings. See the choice/opt-out section below.

When you order products or services from our site, we need to know your name, e-mail address, mailing address, credit card number, and expiration date. This allows us to process and fulfill your order and to notify you of your order status. For more details, see the section below about online security.

We may use the information we collect to notify you about important changes to the site, new services or features offered by the Foundation, and special offers and information we think you will find valuable. If you would rather not receive this information, please contact us through one of the channels identified in the choice/opt-out section.

We also collect anonymous, non-identifiable information about visitors. When you visit our site, our server automatically records your domain (service provider), operating system and web browser type/version as well as the time and date of your visit on a particular page. The information automatically recorded by our server is used only for statistical purposes so that we can manage our site and better serve our visitors. Our server does not and cannot record identifiable information such as your e-mail address.

Cookies

“Cookies” are small pieces of information that are stored by your browser on your computer’s hard drive. Our cookies do not contain any personally identifying information. 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. Cookies also may be used for features such as keeping track of the contents of a shopping cart or helping to deliver more personalized content.

Online Security

When you are asked to provide personal, private and/or financial information (such as a credit card number), we use state-of-the-art security to safeguard your data. The secure server software, SSL (secure sockets layer), encrypts or encodes all information you enter before it is sent to us. 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.

Does The Marfan Foundation disclose the information it collects to third parties?

The Foundation does not sell, trade, or rent your personal information to others.

Choice/Opt-Out

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 webmaster@marfan.org. Please allow up to five business days for your request to be fulfilled.