Privacy Policy

Effective date: May 31, 2024

This Policy describes how Embracing Ostomy Life, a California not-for-profit corporation (“EOL,” “we,” “us”) collects, uses, and shares personal information from and about people who visit our website, https://embracingostomylife.org/ (our “Site”), participate the support services we provide (our “Services”), and whose information we receive in other ways (“you” or “your”). 

Please review this Privacy Policy carefully. By visiting our Site, participating in our Services, or communicating with us in other ways, you agree to the collection, use and processing of your personal information as described in this Privacy Policy. If you do not agree to the terms of this Privacy Policy, please do not access our Site or provide your personal information to us.

Click on the links below to jump to specific sections of our Privacy Policy:

Who We Are
Scope of this Privacy Policy
Personal Information We Collect from You
Sensitive Personal Information
Personal Information We Collect From Other Sources
How We Use Personal Information We Collect
Automated Online Data Collection
Disclosure of Personal Information to Third Parties
How You Can Restrict Automated Online Data Collection
Your Communications Choices. 
Retention and Protection of Personal Information
Links to Third-party Feature and Websites
Social Media
Children’s Personal Information
Processing of Personal Information in the United States
Changes to this Privacy Policy
Requests and Rights Regarding Your Personal Information
How to Contact Us

Who We Are

Embracing Ostomy Life is dedicated to helping patients as they recover from ostomy surgery and work through their emotional and physical challenges by providing our Services including recovery support, peer and community support services, information resources, and other programs. We are a private, nonprofit, 501(c)(3) charitable organization. 

Scope of this Privacy Policy

We use the term “personal information” in this Privacy Policy to refer to information that identifies, relates to, describes, or is reasonably capable of being associated or linked, directly or indirectly, to an identifiable individual. Personal information includes any information that can be used on its own or combined with other information to identify, contact, or profile an individual.

We collect personal information you submit to us directly, that is gathered automatically online by cookies and similar internet technologies, and that we receive from social media and other sources. For example, we collect information about you when you:

  • Visit our Site and any other website or online portal we operate that displays a link to this Privacy Policy;
  • Join the Ostomy Family on our Site;
  • Sign up for our mailing list to receive updates;
  • Sign up to receive our Services as a patient or caregiver;
  • Sign up to provide peer volunteer support Services;
  • Make a donation;
  • Communicate or interact with us in other ways

This Privacy Policy does not apply to:

Collection by third party websites. Our Site contains links to third-party websites that we do not operate or control. The content and privacy practices of these third-party websites are governed by their own privacy policies. We encourage you to review the privacy statements posted by third-party websites to understand how they will collect and use your information.

Anonymized information. Information that has been modified in such a substantial way so that it can no longer be used to identify an individual.

Personal Information We Collect from You

We collect personal information when you:

Contact EOL for information.  To contact us for information, we ask for your e-mail address and to identify the information you would like to receive.

Join the Ostomy Family or sign up for our e-mailing list.  To join or sign up to receive e-mail updates, we ask for your name and e-mail address.

Participate in Alive & Kicking.  To sign up for our surgery recovery program, we ask for your name, email address, the date and type of your surgery (optional), and when you want to start receiving your daily program emails. 

Participate in Team HOPETo participate as either a patient, volunteer, or caregiver in Team HOPE, Helping Ostomates through Peer Encouragement, we initially ask for your name and e-mail address. To connect a volunteer and a patient or caregiver, we will ask for your name and age. We also ask you to provide, at your option, more detailed online questionnaire information to help us select an appropriate peer match for you. Additional information you may choose to provide may include your phone number, country, state/province, zip code, marital status, preferred method and time of communication, preferred language, information about your ostomy surgery, and your hobbies and interests.

Visit our SiteData about your device and browsing session is automatically collected using cookies and other internet technologies when you visit our Site. For information about the types and purpose of data collection on the Site, see the section of this Privacy Policy titled, “Automated Online Data Collection.” 

Post on a Community Forum. The Site may offer publicly accessible blogs, community forums, comments sections, discussion forums, or other interactive features (“Community Forums”). Any information that you post on a Community Forum will be read, collected, and used by others who access it. To request removal of your personal information from a Community Forum, please contact us. See “How to Contact Us” below.

Participate in Events, Surveys, and Studies.  If you register for an event or participate in a survey or research study, we may ask for your name, phone number, email address, and information relating to the specific matter. 

Sensitive Personal Information

Some of the information a patient or volunteer may disclose in receiving or providing Services is sensitive in nature. For example, a participant in Alive & Kicking (ostomy recovery program) and Team HOPE (mentoring program) may provide their age, type of surgery, reason for the surgery, and recovery progress. We do not require anyone to provide sensitive personal information in order to participate in our Services. If you choose to provide sensitive information, EOL will only use and disclose the information for the purposes identified in this Privacy Policy or with you express consent. For statistical and study purposes, we may use this information on an anonymized and aggregated basis and will not make the information available to third parties in a way that it can be linked to an identifiable person.

Personal Information We Collect From Other Sources

Social Media Platforms—You may be able to connect to our Site using your social media accounts, such as Faceboo, Instagram, and X (formerly Twitter). You can also log onto our Site using single sign-on services such as Facebook Connect or an Open ID. The sign-on services will authenticate your identity, provide you with the option to share certain personal information (such as your name and email address) with us, and pre-populate our sign-up form. Services like Facebook Connect give you the option to post information about EOL on your profile page to share with others within your network. If you authorize us to connect with you using your social media account, we will collect your name, email address, location, profile picture, other images you post, URL, and any other personal information that the social media platform makes available to us. We may use and disclose that information in accordance with this Privacy Policy.

How We Use Personal Information We Collect

EOL uses personal information to provide our Services, stay in contact with our community, and meet our users’ expectations, including to: 

  • Operate, maintain, update, and protect our Site;
  • Provide our Services including our ostomy recovery program, Alive & Kicking;
  • Match patients and volunteers and operate our ostomate mentoring program, Team HOPE;
  • Provide current and useful information to patients, the medical community, and the general public about ostomy surgery, recovery, and successful living;
  • Manage our community e-mailing list and send communications about our activities and Services (you can opt-out of receiving our communications as explained under How You Can Restrict Online Data Collection and E-mail Communications);
  • Raise awareness about ostomies in family and friends of an ostomy patient, in the general public, and the medical community;
  • Analyze Site usage and performance as explained in the section of this Privacy Policy titled “Automated Online Data Collection;”
  • Comply with valid legal process and respond to governmental requests.

Automated Online Data Collection

When a user visits our Site, we (and our authorized third-party service providers) may automatically record data from the user’s device by using cookies, web beacons, pixels, and other internet tracking technologies and device identifiers (collectively referred to as “cookies”). This data is gathered from all our Site visitors may include the IP address or other device address or ID, web browser and/or device type, the web pages or sites visited just before or just after using the Site, the pages or other content the user views or interacts with on the Site, and the dates and times of the visit, access, or use of the Site. 

EOL does not use the Site data collected by automated means to identify Site users. This data is used for Site operations, analysis, and development purposes, which may  include to:

  • Store personal settings and preferences for the Site;
  • Collect and analyze log data about when and how visitors connect to and use our Sites;
  • Analyze usage of our Sites;
  • Maintain, improve performance, and protect the Sites;
  • Retain login username and password for user accounts if available for Team HOPE and other Services;
  • Protect our Site and users by detecting suspicious activity and unauthorized access;
  • Assess the effectiveness of our e-mail communications by tracking users’ interactions with our messages, such as when a user opens, clicks on, or forwards a message. 
  • For other purposes with your consent. 

You can use the settings or tools offered on your browser to refuse or restrict certain cookies or to delete cookies that have already been stored. (See “How You Can Restrict Automated Online Data Collection” below.)

Disclosure of Personal Information to Third Parties

EOL does not and does not plan to:

  • Sell personal information
  • Share personal information for purposes of targeted or behavioral advertising (which is advertising based on inferences about an individual’s interests and preferences derived from data collected about the user’s activities on multiple websites); or
  • Provide personal information to third parties for their direct marketing purposes.

EOL discloses personal information to third parties under the following circumstances.

Third-Party Service Providers: We share information, including personal information, with third-party service providers we use to provide hosting for and maintenance of our Site, enable a chat feature on some Services, e-mail services, data backup and storage, Site data analytics and other services for us. These third-party service providers may have access to or process personal information for the purpose of providing these services for us. They are not permitted to use that information for their own commercial purposes.

Team HOPE and Other Program Participants: If you sign up to participate in Team HOPE, our peer mentoring program, we will provide personal information to your volunteer or patient match. They are permitted to use and disclose that information only for the purposes of the program and as described in this Privacy Policy.

Site Analytics:  We use Google Analytics and other website analytics services to measure and evaluate access to and traffic on the Site and create user navigation reports for our Site administrator. Google operates independently from us and has its own privacy policy, which we suggest you review. Google may use the information collected through Google Analytics to evaluate users’ activity on our Site. For more information, see Google Analytics Privacy and Data Sharing.

With Your Consent: We may also share personal information with third parties when we have your permission to do so. For example, 

Law Enforcement, Legal Process and Compliance. We may disclose personal information or other information if required to do so by law or in the good-faith belief that such action is necessary to comply with applicable laws, in response to a facially valid court order, judicial or other government subpoena or warrant, or to otherwise cooperate with law enforcement or other governmental agencies.

Security and Protection. We also reserve the right to disclose personal information or other information that we believe, in good faith, is appropriate or necessary to (i) take precautions against liability, (ii) protect ourselves or others from fraudulent, abusive, or unlawful uses or activity, (iii) investigate and defend ourselves against any third-party claims or allegations, (iv) protect the security or integrity of the Site and any facilities or equipment used to make the Site available, or (v) protect our property or other legal rights, enforce our contracts, or protect the rights, property, or safety of others.

How You Can Restrict Automated Online Data Collection

By using the Site, you consent to the processing of your personal information by both the EOL and the Site analytics services providers, such as Google Analytics. Some cookies, referred to as “necessary” cookies cannot be restricted because the Site cannot be accessed or used without those. However, those cookies will expire when you close the browsing session. 

You can restrict the types of cookies used to track and log data about your computer and mobile device by managing the preference settings on your browser or device. You can learn how Google collects data on its partner sites and how to restrict that data collection at https://policies.google.com/technologies/partner-sites?hl=en-US .

Note that if you restrict the use of cookies some of the features on our Site may not be fully functional.

The controls you may be able to use include:

  • Managing the settings on your web browser or device
  • Installing the Google Analytics opt-out browser add-on, which is described at the Google Analytics Opt-out Browser Add-on page at https://tools.google.com/dlpage/gaoptout
  • Purchasing a utility from an independent software provider that you install on your computer browsers to limit tracking of your browsing activity.

Do Not Track (DNT) is an optional browser setting that is used by some website operators and third parties.  Our Site does not respond to DNT signals.

Your Communications Choices

E-mail communications.  You can opt-out of receiving e-mail communications from us by following the “unsubscribe” instructions included in each of our e-mail communications (except those that are sent as a specific and direct response to a question or request you initiated). You can also opt-out by emailing us at the address provided in “How to Contact Us” and providing the names/email address that you want us to remove from our e-mail database and add to our ‘Do Not Contact’ list. It may take up to ten days to process your request to unsubscribe from e-mail marketing messages. If you opt-out of our general messages, we may still send e-mails to you that involve specific responses to your direct requests and questions.

Text messages.  We do not use text messages to communicate unless an individual specifically asks that we do so and provides a mobile phone number voluntarily for that purpose. 

Retention and Protection of Personal Information

We will retain your personal information as long as we provide Services to you or believe that you are interested in staying in contact with EOL, and as necessary to comply with our legal obligations.

We maintain commercially reasonable security procedures and practices appropriate to the nature of the categories and specific items of personal information we collect.  However, neither people nor systems can operate in a fully secure manner and no method of transmission over the Internet or method of electronic data storage is fully secure.  While we use reasonable efforts to protect your personal information, we cannot guarantee the security of the personal information you provide to us. 

Our Team HOPE peer mentoring program necessarily involves sharing personal information between the peer volunteer and patient. They are expected to act professionally and confidentially. Volunteers and patients must sign and agreement before participating in the Team HOPE program which includes a commitment to respect the other participant’s confidentiality and privacy. Volunteer mentors are required to complete the United Ostomy Associations of America’s (UOAA) training program.

The information provided in the Team HOPE questionnaire and patient/volunteer portal is collected and stored by EOL’s own Microsoft Azure platform and is encrypted in transit and at rest (in storage). Please immediately notify us if you have reason to believe that your information provided to us, interaction with, us or a Team Hope volunteer or patient is no longer confidential or secure.

The Site contains links to features and websites operated by third parties. EOL is not responsible for the privacy practices of any third-party websites or services. Because these third parties will have access to your personal information, we recommend that you review their privacy policies and practices.

Links to Third-Party Sites.  Our Site may include links to websites operated by third parties that have information we think may be of interest to you.  If you click on a third-party link, you will be directed away from our Site to that third-party website and any information you provide you submit to that third party website or is collected from your usage, will be available to the third-party operator. The third-party website operator may collect your IP address or device identifier and other internet browsing data and may set a cookie to enable their features to function and track your usage.  We recommend that you review the privacy policies of these websites before sharing any information with them. We have no control over and assume no responsibility for the content, accuracy, privacy policies, or practices of any third-party websites or services.

Third party Features.  Our Site may use other companies’ applications to power some features, for example, to manage our Team Hope communications portal, and the login/authentication process for password-protected areas of our Site. Some of these third-party features may be branded with Company logo, even though they are not operated or controlled by us.  These third-party applications are able to access and collect data from your use of these features. 

Social Media

Our Site may include social media features, such as the “Facebook Like” button, and widgets, such as the “Share This” button or interactive mini- programs that run on our Site. These features may collect your internet protocol (IP) address, which page you are visiting on the Site, and the social media platform may set a cookie to recognize you and enable the feature to function properly. Social media features and widgets are either hosted by a third party or hosted directly on the Site. Your interactions with these features are governed by the privacy practices of the companies that provide them. 

You may choose to log in to the Services using single sign-in services such as Facebook Connect or an Open ID provider. These single sign-on services will authenticate your identity, provide you with the option to share certain personal information (such as your name and email address) with us, and pre-populate our sign-up form. Services like Facebook Connect give you the option to post information about your activities in the Services to your profile page to share with others within your network.

Please refer to the privacy settings in your social network account for information about (1) what data is shared with connected applications, (2) how to manage the data that is shared through your social media account settings, including information about your activities using our Services, and (3) how to disconnect a social media account from our Site. This Privacy Policy applies solely to information under our control.  Company is not responsible for the privacy practices of the social media platforms you use in connection with our Site.  Company is not responsible for the privacy practices of social media platforms. We recommend that you review their privacy policies and practices.

Children’s Personal Information

We do not knowingly collect any personal information about children under the age of 16 without verifiable consent from a parent or legal guardian. We encourage parents and legal guardians to monitor their children’s Internet usage and to help enforce this Privacy Policy by instructing their children never to provide personal information through the Site without their permission If you are under the age of 16, please do not submit any personal information at our Site or in person at our stores. If you have reason to believe that a child under the age of 16 has provided personal information to us through the Site or Services, please contact us. See “How to Contact Us” below.

Processing of Personal Information in the United States

Company operates under United States laws and regulations.  If you reside or are located in a different country, the data protection laws of that country may differ from the laws of the United States in the ways your personal information is protected.  We want you to understand that when you provide your personal information to us, you are giving your consent to (1) the transfer of your personal information outside of your country of residence, and (2) the processing of your information in accordance with the laws of the United States and the guidelines of this Privacy Policy.

Changes to this Privacy Policy

We reserve the right to amend this Privacy Policy at any time in order to address Company’s future developments, changes in industry trends, or changes in legal requirements and will post the revised Privacy Policy on the Site. If we materially alter the terms of this Privacy Policy, we will provide other notification as required by applicable law. 

Any changes will become effective upon the posting of the revised Privacy Policy on the Site. You can determine when the Privacy Policy was last revised by referring to the “Effective Date” legend on the top of this Privacy Policy.  

By continuing to use the Site following such changes, you will be deemed to have agreed to such changes.  If you do not agree with any or all of the terms of our Privacy Policy as in effect at any time, you should not continue to use the Site.  

Requests and Rights Regarding Your Personal Information

You can contact us at contact@embracingostomylife.org to make any of the following requests:

  • To access the personal information EOL maintains about you;
  • To update or correct your personal information;
  • To stop sending general information emails;
  • To ask us to stop processing your personal information;
  • To withdraw consent previously given to collection, use, or disclosure of certain personal information;
  • To request deletion of personal information.

While we may not be required by law to agree to all requests, we will attempt to accommodate reasonable requests when appropriate. 

Please note that EOL does not provide personal information to third parties for their direct marketing purposes.

How to Contact Us

To make a request regarding your personal information or If you have questions or complaints regarding this Privacy Policy or about EOL’s privacy practices, please contact us.

E-mail: contact@embracingostomylife.org