Our mission is to increase endometriosis awareness, fund landmark research, provide advocacy and support for patients, and educate the public and medical community.
Founders: Padma Lakshmi, Tamer Seckin, MD
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Privacy Policy

The Endometriosis Foundation of America understands your concerns about privacy and your interest in knowing how your information is used and shared, and so we have created this Privacy Policy (the “Privacy Policy”) to provide you with more information on these topics. This Privacy Policy describes the practices, policies, and procedures for our website located at www.endofound.org (the “Website”). This Website is owned and operated by Endometriosis Foundation of America, Inc. (hereinafter referred to as “EndoFound” or “we” or “us”). Please note that this Privacy Policy applies only to EndoFound’s online information-gathering and sharing practices occurring on the Website, and does not apply to any of our practices conducted offline. By visiting this Website, you are accepting the practices, policies, and procedures described in this Privacy Policy, and you are further indicating that you agree to be bound by the terms of this Privacy Policy. If you do not agree to the terms of this Privacy Policy, please do not visit or use any of the links on this Website. We may update this Privacy Policy from time to time, so please check this Privacy Policy periodically for changes. The date this Privacy Policy was last updated is stated at the end of this document.

SUMMARY

The notifications provided by this Privacy Policy include:

  • What personally identifiable information we collect from you through the Website.
  • How we use the information we collect.
  • With whom the information may be shared.
  • The kind of procedures we employ in an effort to hinder the unauthorized access, use or disclosure of information you provide to us.
  • Information related to third-party websites.
  • The laws that apply to those accessing our Website from outside of the United States.
  • How you can learn about changes to our privacy policies, practices, and procedures.
  • How you can make changes to the information we collect on you
  • Other rights that you may have
  • Special provisions related to the European Union’s General Data Protection Regulation

THE INFORMATION WE COLLECT

Personal Information You Provide And How It Is Used: You may freely visit our Website anonymously and without being required to provide us with any personal information. However, certain requests and features do require that you provide us with some personally identifying information as more particularly described below. Personal information is data that can be used to identify or contact you. Please do not send confidential information to us directly through this Website, or by email to any of the contact email addresses listed on this Website.

Donate: If you make a donation via the “donate” button, you will be asked to provide certain personally identifying information, such as your name and home address, as well as your credit card billing information, in order to process the donation. The credit card information that you provide at the time of donation is used only to process your donation and will not be stored or used for any other purpose. However, if you opt to make a recurring donation, your credit card information will be stored and used for the purpose of processing your recurring donation.

Create a Fundraising Campaign: The Website provides a variety of opportunities to create a “fundraising” event. If you opt to create a fundraising event, you will be asked to provide a variety of personally identifying information.

Research Participation Opportunities: We may provide information related to ongoing research studies and opportunities to participate in such studies. In applying for these opportunities, you may be asked or required to provide certain personally identifying information.

Email Newsletter: If you opt to receive our newsletter, we will ask you to provide certain personally identifying information, including your email address, first and last name. You may unsubscribe from these emails at any time by using the link provided in the footer of all such emails.

Job Opportunities: We may provide job opportunities with EndoFound. If you apply online you will be asked to provide us with your name, resume, and other contact information.

Volunteer: We provide you the opportunity to volunteer to teach adolescents about endometriosis in your community in an effort to educate. If you want to volunteer, you will be required to apply and in doing so provide us with personally identifiable information.

Contact Us: The Website provides “contact us” links for questions visitors may have about the work we do and our Website. If you contact us through any of these contact forms, we will collect your email address and any other personal information that you provide to us. We will use the information you provide to contact you and to respond to any requests and/or questions. 

Non-Personal Information We Collect by Automated Means And How We Use It: We also collect certain non-personal information (data in a form that does not support a direct association with any specific person or individual) by automated means when you visit the Website. Much of this information is collected through the use of third-party tracking services, which includes Google Analytics. The information collected may include usage information, such as the numbers and frequency of users to the Website, pages visited, web browsing histories, online purchases and searches, social networking activities and similar data. When gathered, this data, if used, is used in the aggregate, and not in a manner that is intended to identify you personally. This type of aggregate information may be shared with third parties at any time. In addition to the third-party tracking services mentioned above, we also collect this information through various other means, including "cookies” and IP addresses as further explained below.

IP Addresses - When you visit and interact with the Website, we or third parties with whom we have contracted to provide services for us may collect Internet Protocol addresses (each an "IP Address"), as well as browser type, Internet service provider (ISP), referring/exit pages, platform type, date/time stamp, and page navigation. An IP Address is a unique identifier number that certain electronic devices use to identify and to communicate with each other on the Internet; your Internet Service Provider automatically assigns an IP Address to the computer that you are using. We gather this information to track Website visitor movement in the aggregate and to gather broad demographic information for aggregate use. Our goal in gathering this information is to learn how our customers and the public are using our Website. We may use this information to enhance our Website or for other lawful purposes.

Do Not Track - Every time your computer sends or receives information over the Web, the request begins with some short pieces of information called “headers.” These headers include information like what browser you are using, what language your computer is set to, and other details. The Do Not Track technology provides individual users with the ability to include a simple, machine-readable header indicating that they don't want to be tracked, and sends a signal to Web sites' visited requesting that the website disable either its tracking or cross-site user tracking of an individual user. Currently, various browsers – including Internet Explorer, Google Chrome, Firefox, Opera and Safari – offer a “do not track” option. Presently, there is no consensus on how Do Not Track should be interpreted, and no common or accepted industry standard for implementing. Consequently, please note that EndoFound’s Website does not currently respond to browsers' Do Not Track signals, and as such your activities will be tracked, regardless of whether you have opted to enable the Do Not Track option offered by your browser.

HOW WE MAY SHARE YOUR INFORMATION

We may disclose all of the information (described herein) that we collect, as stated in this Privacy Policy including in accordance with the terms set forth in this section.EndoFound works with a variety of third-party partners in order to allow us to make the Website available to you, to host and store the information we collect from you, to collect and process donations, and to provide certain functionality and features. Except as stated in this Privacy Policy, we do not reveal personally identifiable information about you to third parties for their independent use unless: (1) you expressly authorize EndoFound to do so, (2) it is necessary to allow EndoFound and its service providers or agents to provide services on EndoFound’s behalf, (3) it is to provide products or services to you, (4) it is disclosed to entities that perform marketing or data aggregation services for EndoFound, (5) it is necessary in connection with a sale of all or substantially all of the assets of EndoFound or the merger of EndoFound into another entity or any consolidation, share exchange, combination, reorganization, or like transaction in which EndoFound is not the survivor, (6) EndoFound is required or permitted to do so for any or all of the following reasons: (i) to comply with a subpoena, legal process, government request or any other legal obligation, (ii) to prevent, investigate, detect, or prosecute criminal offenses or attacks on the technical integrity of the Website or our network, and/or (iii) to protect the rights, privacy, property, business, or safety of EndoFound, its partners and employees or the visitors to the Website.

CHILDREN’S PRIVACY/NOTE TO PARENTS

The Website does not intentionally or knowingly collect, use, or disclose personally identifiable information about visitors to our Website that are less than 13 years of age. If a child under the age of 13 submits information to us through any part of the Website andEndoFound becomes aware that the user submitting the information is under the age of 13, the information provided will be deleted as soon as it is discovered and not used for any purpose. If you are the parent or guardian of a child under 13 years of age and believe that they have disclosed personally identifiable information to us, please contact us at the address below and be sure to include in your message the same user name and password and/or email address that you believe your child submitted, if applicable:

Please note, if you reside in the European Economic Area, Switzerland And UK, users must be 16 years of age or older, and any registration by, use of or access to the Website by anyone under 16 is unauthorized, as further clarified below.

THIRD PARTY WEBSITES/LINKS

We may also provide links to a variety of third-party social media sites and/or websites – such as YouTube, Twitter, Facebook, and others - as a service to you, and in order to provide you i) additional information and/or content related EndoFound, or ii) additional venues in which you can learn about and discuss the activities of EndoFound, or iii) additional websites on which you can purchase gifts in support of EndoFound. Please note that we have no affiliation with any of these other parties and/or websites, and cannot control and are not responsible for the information collection, use, and disclosure practices of such third parties; we encourage you to review and understand their privacy practices and policies, if any, before using providing any personally identifying information to them or initiating any financial transactions. We are not responsible for the content or information of these websites, or any other use of the linked website.

HOW WE ATTEMPT TO SAFEGUARD YOUR INFORMATION

We maintain – and ask that any third-party partners who may store information on our behalf to maintain – administrative, technical and physical safeguards for the Website designed to protect your personal information against theft, loss, misuse or unauthorized access, disclosure, alteration or destruction of the personal information that we collect from you. However, no website, application or transmission can guarantee security. Thus, while we have established and maintained what we believe to be reasonable procedures to protect the confidentiality, security, and integrity of personally identifying information obtained through the Website and we strive to protect your personal information, we cannot ensure or warrant the security of any information you transmit to us. When you link to one of the social media venues provided on the Website, the personal information you share is visible to other users and can be read, collected, or used by them. You are responsible for the personal information you choose to submit in these instances and understand, acknowledge, and agree that you transmit certain personal information over this Website at your own risk.

USE OF THE WEBSITES FROM OUTSIDE THE UNITED STATES

We do not represent or warrant that the Website, or any part thereof, is appropriate or available for use in any particular geographic location. If you choose to access our Website, you do so on your own initiative and at your own risk and are responsible for complying with all local laws, rules, and regulations applicable in your jurisdiction. Please note that the Website is hosted in the United States and is governed by United States law. If you are visiting the Website from outside the United States, please be aware that your information will be transferred to, stored and processed in the United States where our servers are located and our central database is operated. The data protection and other laws of the United States and other countries might not be as comprehensive as those in your country. By using the Website, you consent to your information being transferred to our facilities and to the facilities of those third parties with whom we share it as described in this Privacy Policy.

CHANGES TO OUR PRIVACY POLICY

We reserve the right to revise this Privacy Policy at any time. Please check back regularly to see if there have been any changes to this policy, which you can determine by reviewing the Effective Date listed below. By continuing to use the Website after those changes become effective, you consent and agree to be bound by the revised Privacy Policy.

CONTACTING US If there are any questions regarding this Privacy Policy you may contact us at https://www.endofound.org/contact

EUROPEAN UNION AREA, SWITZERLAND AND UNITED KINGDOM USERS

The following provisions apply only to users residing in the European Union Area (“EEA”), Switzerland and the UK.

Please note, in May of 2018, a new data privacy law known as the EU General Data Protection Regulation (“GDPR”) went into effect. Pursuant to GDPR, we are required to provide those residing in the EEA, Switzerland and the United Kingdom (hereinafter, the “EU Users”) additional information and rights related to the “Personal Data” we collect about them. We summarize such information and rights below.

HOW TO CONTACT US

The Endometriosis Foundation of America(the Data Controller) is the owner and operator of the Website. If you need to contact us for any reason related to this Privacy Policy or your use of the Website, please contact us at EMAIL (info@endofound.org) or write to us from this link.

PURPOSE FOR INFORMATION COLLECTION

As noted in this Privacy Policy, you may visit our Website without being required to provide us with any Personal Data. However, should you decide to provide such information, the information we collect will be used to meet your requests or to provide you with the applicable information or service requested, and as further described herein.

LEGAL GROUNDS FOR PROCESSING PERSONAL DATA

EndoFound will process personal data that we receive from EU Users on the ground that it is in our legitimate interest for the effective administration of the Website, to fulfill and/or address your requests, or to provide the functionalities and features as further described herein. 

YOUR INFORMATION AND YOUR CHOICES; WITHDRAWAL OF CONSENT

GDPR provides EU Users with additional rights in respect to the Personal Data we hold about you, including the right i) to be informed about the Personal Data we have collected, and ii) to request a copy of the Personal Data, and iii) to have your Personal Data deleted, and iv) to lodge a complaint about our processing of your Personal Data with your local supervisory authority. Upon appropriate written request we will update or amend your Personal Data, but we reserve the right to use any information previously obtained to verify your identity or take other actions that we believe are appropriate and lawful. You may access, correct, or request deletion of your Personal Data – or request that we stop any processing of your Personal Data - by contacting us at the address listed above. We will respond to your request within a reasonable timeframe.

Please note we may need to retain certain information for record keeping purposes, and there may also be residual information that will remain within our databases and other records, which will not be removed from such locations. Additionally, there may be circumstances in which we are not legally required to comply with your request because of the laws in your jurisdiction or because of exemptions provided in data protection legislation in general, and GDPR in particular. Finally, please note that we are not responsible for removing or deleting information from the databases of third parties (such as service providers) with whom we have shared information about you, but we will make the request on your behalf for such removal/deletion.

CHILDREN’S PRIVACY/NOTE TO PARENTS OF CHILDREN RESIDING IN THE EEA, SWITZERLAND, AND UK

The Website does not intentionally or knowingly collect, use, or disclose personally identifiable information about visitors to our Website that are less than 16 years of age. If a child under the age of 16 submits information to us through any part of the Website andEndoFound becomes aware that the user submitting the information is under the age of 16, the information provided will be deleted as soon as it is discovered and not used for any purpose. If you are the parent or guardian of a child under 16 years of age and believe that they have disclosed personally identifiable information to us, please contact us at the address below and be sure to include in your message the same user name and password and/or email address that you believe your child submitted, if applicable:

PRIVACY POLICY EFFECTIVE DATE

This Privacy Policy is effective as of January 2, 2018