Privacy Notice (Privacy Policy)

Last Updated: January 31, 2024

  • Introduction. The Lipedema Foundation (“LF”) takes the privacy of the users of this website, https://www.lipedema.org/ (the “LF Website”) very seriously and maintains safeguards to store and secure information about its users. This Privacy Notice (“Notice”) explains what information is collected from you and your use of the LF Website and its services through your voluntary interactions with LF, and how LF uses this information. We urge you to read this Notice carefully. 

This Notice applies to your use and browsing of the LF Website, as well as any mobile-optimized version of this site. References to "LF" includes the LF, any parent or subsidiary thereof, any company affiliated with LF, and any officers, directors, shareholders, employees and agents of same. 

This Privacy Notice does not apply to the Lipedema Foundation Registry (“LFR”).

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

We strongly urge you to read this Notice and make sure that you fully understand and agree to it. If you do not agree to this Notice, please discontinue and avoid Browsing and/or make any other use of the LF website.

  • Third Party Websites. This Notice 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 other means of access. For example, our website is hosted by Squarespace which also provides analytics, cookie and visitor data tracking. Squarespace in turn uses Google Fonts and Adobe Fonts. We use Formstack forms that integrate with Constant Contact, Google Drive, Google Sheets, and Google Docs. Our website has various “Connected Accounts”: YouTube, Twitter, SmugMug, Vimeo, and Facebook. If you leave the LF Website to visit any third-party websites, including the platforms related to any of these connected accounts, you should review their Terms of Services, Privacy Policies and related conditions (see below). 

  • What Data Does LF Collect?
    LF collects two both Personal Data (as described below) and non-Personal Data from its LF Website users.

  • Your Personal Data. As between our relations with you in connection with your use of the LF Website, “Personal Data” means any data, which may enable the identification of a specific person, or is otherwise linked to such potentially identifying data.

  • On What Grounds Do we Collect your Personal Data? We collect and use your Personal Data for our legitimate interests described below. Furthermore, using the LF Website, you also consent to the collection and use of information terms set forth herein. However, where applicable law requires your opt in consent with respect to Personal Data not related to our core requirements by us in order to properly make the LF Website available to you, we will not expand the scope of disclosure or use of your Personal Data, without first obtaining such consent. 

  • Purposes for Which We Collect Your Data.
    Our use of the Personal Data we collect is made for the following purposes:

    • for use in accordance with your consent; 

    • to act in compliance with applicable law; 

    • facilitate our legitimate interests in maintaining and improving the LF Website and the content included thereto; 

    • to help us understand how the LF Website is used;

    • to help improve our communications with our LF Website users to support the website’s operations, to protect our website users, ourselves and the LF Website;

    • to improve the content on the LF Website;

    • to respond to LF Website user preferences and needs; and

    • to developing new products and services.

We may combine non-personally identifiable information with Personal Data to offer services that may be of specific interest to you, provided that you consent to receive such information. 

  • Communications with You. We may also use your Personal Data to contact you via the email address you provide to us, in order to notify you about new features, updates, services, events and special opportunities or any other information we think you will find valuable.

  • How Does LF Collect Your Data?

    • Personal Data: We collect two main categories of Personal Data:

a)      Personal Data Automatically Collected or Generated.

When you visit, interact with or use the LF Website, including when you fill out electronic forms, or send to, or otherwise receive from, us, e-mail, we may collect or generate technical data about you. We collect or generate such data either independently or with the help of third party services, including through the use of “cookies” and other tracking technologies (as further detailed in our cookies policy).

Such Personal Data many consist of connectivity, technical or aggregated usage data, such as IP address, non-identifying data regarding the device, operating system, browser version locale and language settings used, the cookies and pixels installed on such device, and the activity (clicks and other interactions) of users of the LF Website.

We do not use Personal Data to learn a person's true identity or contact details, but mostly to have a better understanding on how our users typically use browse the LF Website and/or for promotional purposes.

b)     Data Received From You. 

You may provide us Personal Data voluntarily, such as your name, e-mail address, country, maillist preferences, institution of employment, mailing address and health information, when you fill out forms on the LF Website, such as the Provider Directory form, or when you contact us through other means. 

Disclosure Disclaimer: 

If you disclose Personal Data through content you submit to the LF Website or while otherwise accessing the LF Website, be aware that such information could be read, collected and/or used by other users.   By submitting Personal Data for purposes of being listed in our Provider Directory, you are agreeing to have that Personal Data disclosed to the general public, as the Provider Directory is accessible to all, without restriction. 

You are advised to refrain from disclosing to LF, or otherwise conveying to LF, any Personal Data other than your own.   You are further advised not to convey LF with any medical data and/or other sensitive Personal Data, unless otherwise expressly solicited by LF.

  • Non-Personal Data. LF may collect non-Personal Data via various means, including those prescribed above. Subject to applicable law, LF may share or otherwise use non-Personal Data at its sole discretion and without the need for further approval. 

  • Data Collected by Third Parties.

    • Visitor Data. The LF web site is hosted by Squarespace, www.squarespace.com. When you visit LF’s web site, Squarespace collects certain Personal Data about you, including: (i) information about your browser, network and device; (ii) web pages you visited prior to coming to this web site, and (iii) your IP Address. Squarespace needs the data to run this website, and to protect and improve its platform and services. Squarespace analyzes the data in a de-personalized form. For information regarding how Squarespace collects, preserves and uses such Data, please see Squarespace’s privacy policy at www.squarespace.com/privacy.

    • Analytics. This website collects personal data to power our site analytics, including: information about your browser, network, and device; web pages you visited prior to coming to this website; and your IP address. This information may also include details about your use of this website, including: clicks; internal links; pages visited; scrolling; searchers; and timestamps. We share this information with SquareSpace, our analytics provider, to learn about traffic and activity.

    • Cookies. This website uses cookies and similar technologies, which are small files or pieces of text that download to a device when a visitor accesses a website or app. For information about viewing the cookies dropped on your device, visit About the cookies Squarespace uses.

  • These functional and required cookies are always used, which allow Squarespace, our hosting platform, to securely serve this website to you.

  • These analytics and performance cookies are used on this site, as described below, only when you acknowledge our cookie banner. We use analytics cookies to view site traffic, activity, and other data.

Users who do not desire the functionality offered by cookies may disable cookie functionality in their browsers or through settings on their mobile devices, by following general instructions such as these. However, users who do so may not be able to use some features of the LF Website.

See also SquareSpace Cookie Policy.

  • Fonts. The LF web site uses font files from Google Fonts and Adobe Fonts. To properly display this site to you, servers where the font files are stored may receive personal information about including, including (i) information about your browser, network or device; and (ii) your IP Address. The collection, maintenance and use of such data is governed by the Google Privacy Policy and the Adobe Privacy Policy. 

  • Disclosure of Personal Data to Third Parties.

In Accordance With Your Approval.   LF may disclose your Personal Data in any context and for any purpose where you have provided consent for such disclosure.  For example, if you are a therapist and seek to be listed in our Provider Directory, we may include you in the Provider Directory, which is accessible to the general public, as you agree to such disclosure when you provide your Personal Data for purposes of inclusion in the Provider Directory.     

Compliance with Laws, Legal Orders and Authorities. LF may disclose or allow government and law enforcement officials access to certain Personal Data, in response to a subpoena, search warrant or court order (or similar requirement), or in compliance with applicable laws and regulations, including for national security purposes. Such disclosure or access may occur with or without notice to you, if LF has a good faith belief that LF is legally compelled to do so, or that disclosure is appropriate in connection with efforts to investigate, prevent, or take action regarding actual or suspected illegal activity, fraud, or other wrongdoing.

Service Providers. LF may disclose Personal Data to outside service providers that perform services complementary to LF (the “Service Provider”). For example, LF may work with outside service providers to: (i) distribute emails (ii) assist with direct marketing and collect data; (iii) help detect and prevent fraud; (iv) otherwise assist LF in improving the LF Website; and (v) using Forms to collect Personal Data. LF requires that these outside service providers agree to keep confidential all such information and to use it for the purposes designated by LF. 

Below is a list of the third-party service providers to whom we provide access to your Personal Data, and the respective purposes regarding which such Personal Data is disclosed:

Name of Service Provider: SquareSpace

Purpose: Website host, design, analytics, cookies, visitor data

Link: squarespace.com

Name of Service Provider: Google Fonts

Purpose: Fonts & site display

Link: google.com

Comment: via SquareSpace

Name of Service Provider: Adobe Fonts

Purpose: Fonts & site display

Link: adobe.com 

Comment: via SquareSpace

Name of Service Provider: YouTube

Purpose: Embedded video

Link: YouTube.com

Name of Service Provider: Vimeo

Purpose: Embedded video

Link: Vimeo.com

Name of Service Provider: Formstack

Purpose: Mail list signup form & job application form

Link: formstack.com

Name of Service Provider: Constant Contact

Purpose: Mail list signup form & job application form

Link: constantcontact.com

Comment: via Formstack integration

Name of Service Provider: Google Suite products including Google Drive, Google Sheets, Google Docs & Gmail

Purpose: Mail list signup form & job application form 

Link: Google.com

Comment: via Formstack integration

Name of Service Provider: Google Analytics

Purpose: Analytics and Cookies

Link: Analytics.google.com  

Name of Service Provider: AirTable

Purpose: Idea Database, Provider Directory, & Roadmap Feedback

Link: airtable.com

Comment: Provider Directory via HubSpot Intergration 

Name of Service Provider: HubSpot

Purpose: Provider Directory, Constituent Relationship Management, &  Mail list signup form

Link: hubspot.com

  • Protecting Rights and Safety. LF may share your Personal Data with others, if we believe in good faith that this will help protect the rights, property or personal safety of LF, any of the LF Website users, or any members of the general public.

  • Security Measures. LF maintains physical, electronic and procedural safeguards to help guard your Personal Data. We restrict access to personally identifiable information to authorized persons and on a need to know basis. While we strive to protect your Personal Data, we cannot guaranty the security of any information you transmit to us.

  • Retention and Transfer of Personal Data.

o   LF is a US entity, and thus abides by applicable US privacy law; however, it has also taken upon itself, to adopt additional security measures and policies regarding the storage and transfer of your Personal Data, and only to use it in accordance with this Privacy Notice. While privacy laws may vary between jurisdictions, LF has taken reasonable steps to ensure that your Personal Data is treated by its affiliates and Service Providers in a secure and lawful manner, and in accordance with common industry practices, regardless of any lesser legal requirements that may apply in their jurisdiction.

o   LF may allow access to your Personal Data for the uses prescribed in this Privacy Notice, internally, and to its Service Providers. In instances where Personal Data is collected from individuals within the EU, we will make sure that transfer outside EU borders to other entities (a) takes place pursuant to an EU Commission Adequacy Decision is in place, or (b) we have a legitimate interest of such transfer, and the recipient entity is bound by similar privacy measures and policies that we apply.

o   In general, SquareSpace retains your Personal Data for a period of 30 minutes to 2 years, depending on cookie type (see https://support.squarespace.com/hc/en-us/articles/360001264507 and https://www.squarespace.com/cookie-policy/ ); however, we may inform you via email of extending such period from time to time. Please note that except as required by applicable law, we will not be obligated to retain your data for any particular period, and are free to securely delete it for any reason and at any time, with or without notice to you.

  • Your Rights Regarding Your Personal Information

    You may have certain rights regarding the manner of collection, processing and usage of your personal information pursuant to applicable privacy laws such as the EU General Data Protection Regulations (“GDPR”). Under the GDPR (to the extent it applies to you) you may be eligible for the following rights:

    • The right to have your personal Data deleted.

      This right is subject to any requirement we may be subject to in connection with our compliance with a legal obligation / our exercise of a legal defense.

    • The right to access the Personal Data collected and processed.

      In order for us to accommodate such right, please contact us in accordance with the details found at the “Contact us” section below.

    • The right to rectify untrue or incorrect Personal Data.

      In order for us to accommodate such right, please contact us in accordance with the details found at the “Contact us” section below.

    • The right to object to us processing your Personal Data.

      You may be entitled to object to certain processing functions, made for example, in connection with profiling activities. In order for us to accommodate such right (to the extent applicable), please contact us in accordance with the details found at the “Contact us” section below.

    • The right to have your Personal Data exported at your request.

      We will make efforts to comply with within a reasonable time, and provide you with such compiled data in an electronic medium of our choice.

Please note that the above list contains a summary of the main rights you may have under the GDPR. Under no circumstances shall the above be deemed as an exhaustive list, nor should you rely on it in terms of fully understanding all of your rights under the GDPR.

  • Children. The LF Website is directed towards and designed for use by persons aged 16 and older. We do not solicit or knowingly collect Personal Data from children under the age of 16. If we nevertheless receive Personal Data from an individual who indicates that he or she is, or whom we otherwise have reason to believe is, under the age of 16, we will delete such information from our systems.

  • Contacting us

LF hopes that the information in this Notice 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 info@lipedema.org.

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.

If you have any questions about this Privacy Notice, or in the event that you wish to exercise certain rights you are eligible for with respect to your Personal Data, please contact us via the below online contact form. We welcome your questions and suggestions about our Privacy Notice.

Contact Information:

By mail:  

Lipedema Foundation

450 Lexington Ave

Floor 38

New York, NY 10017

USA

By email: info@lipedema.org  (kindly state the nature of your inquiry at the subject line of the email)