Privacy Policy

Lipedema Foundation (“LF”) takes the privacy of its users very seriously and maintains safeguards to store and secure information about its users.  This Privacy Policy (“Policy”) explains what information is collected from you and your use of the LF Website and its services through your voluntary interactions with LF (for example, subscription to an LF publication, communication with or posting information on the LF Website, or participation in an LF member survey), and how LF uses this information.  We urge you to read this Policy carefully.  

This Policy applies to the web site owned and operated by LF, as well as any mobile optimized version of this site, and any blogs maintained by LF outside the web site (collectively, the "LF Website”).    References to "LF" includes the LF, any corporate parent or subsidiary thereof, any company affiliated with LF, and any officers, directors, shareholders, employees and agents of same.  LF may share information among the various persons and entities within LF, but information collected under this Privacy Policy is always protected under the terms of this Privacy Policy. 

This Policy applies only to the LF Website and not to the websites of unrelated third-party companies or organizations to which the LF Website provides links, or to any software that may be downloaded either from the LF Website or from unrelated third-party websites.  

By visiting the LF Website, becoming a member or customer, or otherwise voluntarily interacting with and/or submitting information to the LF Website, you agree to this Policy.  LF reserves the right to make changes to this Policy at any time.  In such case, LF will post a notice that this Policy has been modified by revising the “Last updated” date at the bottom of this page.

What information does LF collect?

LF collects two types of information: (1) non-personally identifiable information for everyone who visits its websites; and (2) personally identifiable information for members, registered website users, and anyone who purchases or requests products, services, or information.

Non-personally identifiable information

LF employs cookies to collect information about all visitors to the LF Website, including pages viewed and the order visited, terms used in searching the LF Website, and products investigated or purchased.  LF uses cookies to offer greater functionality, and the information generated from these cookies is used to help determine which services are most important and to guide editorial and business decisions.

Users who do not desire the functionality offered by cookies may disable cookie functionality in their browsers or through settings on their mobile devices.  However, users who do so may not be able to use some features of the LF Website.  For example, a registered user must have cookies enabled in order to access the registered-user sections of the LF Website.

For system administration and troubleshooting purposes, LF logs the originating Internet Protocol (IP) address, the browser and operating system used, and information about your individual use, such as time and date of visits, duration of sessions, and other similar usage or system data.

LF collects this non-personally identifiable information from users who access the public areas of the LF Website.  Users of the public areas of the LF Website browse anonymously.  LF does not review the use of publicly accessible areas of the LF Website by individual users unless this information will assist in troubleshooting individual problems or in certain cases in conjunction with personally identifiable information (as set forth below under “How does LF use information collected?”).  LF will also review this information if a user access of the LF Website is associated with: (i) attempts to violate the security of LF computer networks; (ii) activity that affects the performance of the LF Website; or (iii) activity that may be related to copyright or other intellectual property infringement, or other violations.

Personally Identifiable Information (“PII”)

In addition to non-personally identifiable information, LF records the user’s name and member/customer ID number for all registered users (i.e., users who have logged into a password-protected area of an LF website).  In the course of using the LF Website, a user may be asked to provide “Personally Identifiable Information” or “PII” (for example, name, address, zip code, email address, telephone number, fax number) in order to submit content, participate in an LF activity, subscribe to a journal, request information, or otherwise interact with the LF Website.  Users may be asked to update their contact information from time to time.

LF also collects email addresses voluntarily provided via membership applications and renewals, website registrations, product purchases, member surveys, downloads of certain materials, email communication sign-ups, and comments made in discussion threads on the LF Website.

The LF Website gives users the ability to post content and interact with other users.  For your safety, we strongly recommend that you do not disclose your PII to other users, or ask other users for their PII.  If you disclose PII through content you submit to the LF Website or while otherwise accessing the LF Website or interacting with other users whether via the LF Website or otherwise, be aware that such information could be read, collected and/or used by other users.  We are not responsible for any information you disclose.

How does LF use the information collected?

LF uses the information it collects to improve its web content, to respond to user preferences and needs, and to develop new products and services.  For example, LF may combine non-personally identifiable information with PII to offer services that may be of specific interest to the user.

Disclosure of PII to Third parties

LF may disclose limited personally identifiable information (e.g., name, address, email address, purchase information) to outside service providers that help LF offer services, and information.  For example, LF may work with outside service providers to: (i) distribute emails or make telephone solicitations; (ii) assist with direct marketing, customize journal advertisements, and collect data; (iii) help detect and prevent fraud; and (iv) otherwise assist LF in enhancing its services and serving its users.  LF requires that these outside service providers agree to keep confidential all such information and to use it for the purposes designated by LF.
Like many other organizations, LF may use outside marketing companies to place and monitor advertisements or links on the LF Website and other websites.  These companies may use non-personally identifiable information (e.g., links clicked on during a visit, browser type, time and date, subject of advertisements clicked on or scrolled over) and PII during your visits to the LF Website and other websites in order to provide advertisements about products and services likely to be of interest to you.  These companies typically use a cookie or a third-party web beacon to collect this information.  LF is not responsible for the collection or use of information by such marketing companies or third-party websites.
LF also may provide certain PII to an outside service provider in order to rent mailing lists of LF’s users to third parties that offer their own products or services deemed to be of interest to the specific user.  These third parties only receive names and addresses.  They do not receive phone numbers, fax numbers, demographic information, or email addresses.


When a user voluntarily provides LF with an email address, the user hereby grants permission to LF to use that email address to send email that user including but not limited to questions, follow-up, advertisements, and bulk email messages.  LF collects data to track the effectiveness of emails, which enables LF to better serve its users.  LF does not sell the email addresses of its members and customers.

Disclosure required by law or emergency circumstances

LF may release personally identifiable information to third parties in order to comply with legal requirements.

External relationships

LF has agreements with other organizations that offer products and services through the LF Website or affiliate agreements.  When a user interacts with these organizations on the organizations’ websites, whether as a result of following links from the LF Website, within an LF email, or otherwise, different rules and privacy policies may apply.  Because LF does not control the collection or use of information collected via these other organizations’ websites, LF is not responsible for their privacy practices, security, or content.

Opt out

LF hopes that the information in this Policy helps you understand how LF uses and protects its users’ information to provide you with better service.  However, you may still choose not to receive information from LF.  LF’s marketing and informational emails include a link for unsubscribing.  Users can also access the Unsubscribe function of ConstantContact to unsubscribe or change their email preferences, or email us at  

LF will process unsubscribe requests as quickly as possible; however, because some email may already be in progress, users may continue to receive emails from LF after making an unsubscribe request.  LF requires up to 10 days to apply your unsubscribe request.  Users may still receive emails regarding transactions (e.g., confirmation after placing an order).

For questions or concerns about this Policy, please contact
Last updated:  January 27, 2017