top of page

Ostomy 101, Inc.  Mobile App and Website Privacy Statement

Last Modified: January 2020


Ostomy 101, Inc.  values the trust that Ostomates extend to us to deliver educational content to help improve lifestyles of people who undergo bowel or urinary diversion surgeries.  We are committed to protecting your privacy when you send us confidential or protected information, and want to ensure our users and social media participants (“you” or “your”) understand how your information is collected and used by Ostomy 101, Inc.. This Privacy Statement) describes what information we collect about you through our social media and our programs, including when and how we collect it; how we use it; how we may share it; and the choices you have regarding our use of your information. 

This Privacy Statement applies to all information we collect from your communications with Ostomy 101, Inc., whether electronic, written or oral; information collected through mobile applications (“Apps”) or our website (“Sites”) that include a link to this Privacy Statement; as well as any other information about you that may be collected offline or received from third parties (collectively, these information sources are referred to as the “Services”). By accessing our Services or providing your information to us, you accept and agree to the practices described in this Privacy Statement.

This Privacy Statement describes our privacy practices under the Index below:  

  1. The types of personal information we may collect about you

  2. How we collect personal information

  3. How we may use your personal information

  4. How we may share your personal information

  5. Other information collected

  6. Data security and protections

  7. Your privacy options and access

  8. Notices and disclosures

  9. How to contact Ostomy 101, Inc. 

  10. Updates to our privacy statement



  1. The Types of Personal Information We May Collect About You

When you engage with Ostomy 101, Inc. or visit or use our Services, we may collect a variety of information. Typically, the type and degree of information we collect will depend on how you choose to interact with Ostomy 101, Inc.. For example, if you are an ostomy patient or caregiver contacting us for assistance, we will need certain levels of information to assist you more specifically than if you are using our website or Mobile App to gather information or donate to Ostomy 101, Inc.. 


Ostomy 101, Inc. collects information from data sent to us which may identify you as an individual or information which is linked or linkable to you as an individual, which will collectively be referred to throughout this Privacy Statement as “Personal Information”: including contact information, demographic information, health and some [limited] financial information, as well as voicemail recordings.  Our general categories of information are summarized below:


Contact Information and Preferences.  You may provide contact information such as your name, mailing address, telephone number, e-mail address, and your preferences for how you would like to be contacted by Ostomy 101, Inc..  We may also be able to use third-party services to supplement or to ensure accuracy of your contact information.

Demographic Information. You may voluntarily provide limited demographic information such as your gender, race or ethnicity, marital status, geographic location, and/or primary language. We may also be able to use publicly available data or third-party services to supplement this information and ensure its accuracy. 

Sensitive Personal Information (other than Health Information). Unless we specifically request or invite you to send us sensitive information, we discourage you from sending or disclosing to us in any way your political opinions, religious beliefs, identity numbers, criminal background, names of family members or relatives or peers, and any similar information about people who have not expressly consented to you to disclose their information. In those cases where we may invite you to provide such information, you will only do so by providing your express consent when there is a clear reason for doing so.  We will ask for sensitive information only to the extent such data is required to ensure that we provide appropriate services or support to you.

Health Information. You may consent to provide limited health information about your ostomy situation, underlying disease or current treatment to better connect with our Services or Sponsors.  For instance, this information may be needed to assist you if you contact Ostomy 101, Inc. seeking information about an ostomy product or if you register to participate in an Ostomy 101 event. This health information may be transmitted electronically for the uses and/or disclosures described in this Privacy Statement. We may request more detailed information if you enroll in an Ostomy 101 educational event or want to participate in a research study.  There is no expectation of privacy available if you post information about your medical care or condition to the Web Site or Mobile App. Do not provide information about someone else and their medical condition or care unless they have expressly given you permission to do so and you have advised them that there is no privacy available for postings on the Web Site or Mobile App. 

Financial Information. If you make a donation to Ostomy 101, Inc. or make a retail purchase on our Web Site, we may collect through PayPal or other third party vendor your payment information necessary to process the transaction. We will retain your credit card information only for as long as necessary to process the transaction or longer if you desire to save your card for further transactions.  Additional information may be collected if you send a check or money order to Ostomy 101, Inc.. 


  1. How We Collect Personal Information 

Ostomy 101, Inc. and its service providers may collect Personal Information in a variety of ways when you participate with us on social media or off-line. For instance, we may collect information about you in the following circumstances:

Requests for Information or other Resources. Ostomy 101, Inc.’s Web Site and Mobile App enable you to ask questions or request services or make a donation.  When you contact us, we will collect the Personal Information you provide in order to assist you.

Patient Support Services. Ostomy 101, Inc. offers free or reduced-cost programs, products and services to help ostomy patients and their caregivers.  Ostomy 101 representatives may also travel to hospitals or other places to meet with patients about lifestyle issues and offer emotional support. If you contact Ostomy 101, Inc. about these support services, you may consent to provide contact and demographic information, as well as some limited health information. 

Web Site and App Use.  Ostomy 101, Inc. may collect Personal Information through your use of our social media, including Ostomy 101, Inc.’s online public forums. If you become a registered user of a Site or App, we may collect login and profile information and retain information about your areas of interest. Please note that any information you post within these public forums will become public and may be read, collected, and used by anyone. Please exercise caution and weigh the risk when deciding whether to disclose your Personal Information in public forums.

Donations. Ostomy 101, Inc. is a 501 C-3 organization providing charitable services, and if you make a donation we will collect Personal Information from you that may include: your name, address, telephone number, and/or e-mail address so that we can send you a receipt.  If you send a check the information may be greater, and we may also collect limited financial information to process your donations.   

Volunteer Participation. If you seek employment with Ostomy 101, Inc. or volunteer for an event or to perform a service on behalf of Ostomy 101, Inc., we will collect information related to your role and some background information as required by law or best business practices. Depending on your role, we may also request a background check.

Research Participation. If you apply for or enroll in a Ostomy 101 supported research study, we may collect information from you which may include health information. Research participant data is maintained in a secure, restricted environment and is accessed only for research purposes.

Event Registration. If you register to participate in an educational or social event, you may be asked to provide information about your relationship to ostomy care, but you are not required to provide this information to participate. This information, however, is useful for event purposes and helps us to let you know about other special resources or activities.

Healthcare Referral. Your healthcare provider or other person may put you in touch with Ostomy 101, Inc. if they believe we have information or resources that can assist you with your lifestyle or care. If you are referred to Ostomy 101, Inc. by a healthcare provider, we will receive contact and demographic information, as well as limited health information from the healthcare provider if you have given consent to do so.   


Fundraising Campaigns or Events. We may use or interact with third-parties to conduct fundraising campaigns or special events, including online platforms. In these instances, we may receive access to donor reports which includes donor name, contact information and donation amount. We also may receive some of your Personal Information if you respond to a cause-related marketing campaign or other promotion benefitting Ostomy 101, Inc. that is conducted by a corporate partner.

Social Media Interfaces. If you elect to connect your social media account to your Site account, certain Personal Information from your social media account will be shared with us, which may include Personal Information that is part of your profile or your friends’ profiles; in addition, if you log-in to our website using your social media account, use a “like” button or use other social media features while visiting our website, those social media companies may collect information about you. Your interactions with social media companies and the use of their features are governed by their privacy policies and anytime you leave our Web Site or Mobile App through a link or browser to another site you will be under the privacy policy of those sites.

Other Possible Sources. We may receive your Personal Information from other sources, including  affiliates that you engage with which may be helping ostomy patients or third-party organizations we collaborate with to provide support services to patients and caregivers; or supplemental data sources to supplement or link the information we collect from you.

  1. How We May Use Your Personal Information

Ostomy 101, Inc. and our affiliated service providers may use Personal Information for the following purposes: 

Information and Support Operations. We will use your Personal Information to respond to your inquiries and to provide you with the educational information, resources and support services you request. We may use your Personal Information to help us better understand the people and patients we serve, to help us communicate with you, and to better serve healthcare providers and your community. We may also use information you provide us to develop, evaluate and improve our programs and services. For instance, we may contact you with a survey seeking voluntary feedback on services you have received or desire.  

We may use your Personal Information to keep you informed about ostomy-related news or to notify you of services and products that may be of interest to you, or to invite you to upcoming special events in your area.  We may also use such information to request donations to Ostomy 101, Inc., or to request your participation in a research study.  

If you have consented for your healthcare provider or caregiver to contact us about you, we will use and disclose your Personal Information as necessary, including electronically, to provide you with the assistance, programs or services requested.  You may have to sign a release to allow us to receive information about your medical condition or treatment.  

Data Analytics.  We may perform data analysis and research activities to gain a greater general understanding of the needs of ostomy patients and their caregivers. This analysis can help us improve patient resources. We do notuse automated decision-making without human intervention.


Fundraising. We may use certain Personal to contact you for the purpose of raising money for Ostomy 101, Inc., but you have the right to opt-out of receiving such future communications with each solicitation. You are free to opt-out of any or all fundraising solicitations and your decision will have no impact on your ability to receive resources or services from Ostomy 101, Inc..

Other Business Purposes. We may use Personal Information for other business purposes, such as conducting audits, fraud monitoring and prevention, data analysis, recordkeeping, developing new services, enhancing, improving or modifying our programs and our Services, identifying usage trends, determining the effectiveness of fundraising campaigns and expanding our services and resource capabilities.

By Consent. In addition to the other uses described in this section, we may also use your information as you expressly authorize us to do so. 


  1. How We May Share Your Personal Information

Ostomy 101, Inc. does not sell Personal Information of donors, volunteers, social media users or event participants. In furtherance of our mission to help ostomy patients, your Personal Information may be shared with:

Third-Party Service Providers. We may need to share Personal Information with third-parties that provide operational services on our behalf (such as website hosting, information technology and infrastructure, data analytics, email delivery, order fulfillment, auditing or other services) or that assist Ostomy 101, Inc. in providing you with support, products and resources. 

Ostomy Affiliates. We may provide your information to affiliated organizations that share a common mission with Ostomy 101, Inc. and which provide other types of educational resources and support services. 

Referring Health Care Providers or Caregivers. If you were referred to Ostomy 101, Inc. by your health care provider or care giver, we may (with your permission) report back to them regarding your usage of programs and services or to coordinate provision of resources or services. 

Mission Collaborators. We may also collaborate with organizations to provide or improve Ostomy 101, Inc.’s services and operations. For example, we may share Personal Information, as applicable, with organizations that are working with Ostomy 101, Inc. to provide free or discounted services and resources to ostomy patients, such as Awesome Ostomy or the UOAA. 

Volunteers. We may share limited personal information, with volunteers and others  who are assisting Ostomy 101, Inc. at an event and who require the information as part of their duties. Volunteers who are entrusted with personal information execute confidentiality agreements with Ostomy 101, Inc. prior to receiving any such information. 

Third-Party Charitable Promotions. We may also share your Personal Information, excluding health information, with third-party companies that are conducting charitable sales promotions to benefit Ostomy 101, Inc., such as Awesome Ostomy. You are under no obligation to respond to those promotions, and if you choose not to, the company is restricted from using your contact information for any other purpose. 

Social Media. If you engage with Ostomy 101, Inc. on a public, social media platform, you may be sharing your Personal Information with the public. By connecting our Social media accounts with your social media account, you authorize us to share information with your social media account provider, and you understand that the use of the information we share will be governed by the social media provider’s privacy policy. Please exercise caution when deciding whether to disclose your Personal Information in these forums.

Memorial and Honor Giving. You may choose to honor someone whose life has been impacted by an ostomy by making a donation in their name or sending a teddy bear or other product to them. Once your gift is received, and if you have requested a notification be sent to the honoree or family, Ostomy 101, Inc. will send a card to the honoree or family acknowledging your gift. The amount of money donated through memorial or honor donations is kept confidential, but they may be provided with the name and address of those individuals who have donated. 

Other Uses or Disclosures of Personal Information. We may also use and disclose your Personal Information as necessary or appropriate: (a) to comply with applicable law, or respond to requests from public and government authorities or to cooperate with law enforcement, or for other legal reasons; (b) to enforce our Terms of Use; (c) to protect our rights, privacy, safety or property, and/or that of our affiliates, or you or others; and (d) under circumstances we believe appropriate to coordinate treatment or educational-related services with your provider or health plan, or for permissible.  In addition, Ostomy 101, Inc. may use, disclose or transfer your information to a third-party in the event of any reorganization, merger, sale, joint venture, assignment, transfer or other disposition of all or any portion of our organization (including in connection with any bankruptcy or similar proceedings) to another non-profit company.

Your Consent. In addition to the other disclosures described in this section, we may also disclose your information as you expressly authorize us to do so.


  1. Other Information Collected

Ostomy 101, Inc. may also collect information that does not reveal your specific identity or does not directly relate to an identifiable individual, referred to throughout this Privacy Statement as “Other Information,” including browser and device information, App usage or download data, IP address, information collected through cookies, pixel tags and other technologies.  Other Information also includes information that has been anonymized or aggregated in a manner that it no longer reveals your specific identity.

If we are required to treat Other Information as Personal Information under applicable law, then we may use and share it for the purposes for which we use and share Personal Information as detailed in this Privacy Statement.


Browser and Device Information. Certain information is collected by most browsers or automatically through your device, such as your Media Access Control (MAC) address, computer type (Windows or Mac),  IP address or other information about your computer. We collect standard web server traffic pattern information and your browsing history related to use of our Web Site and Mobile App. General traffic, Web Site usage, browser information and length of stay information is collected and stored in log files.

App Usage Data.  When you download and use the Ostomy 101 Mobile App, we and our service providers may collect App usage data, such as the date and time your device accesses our servers and what information and files have been downloaded.

Cookies. We use “cookies,” small files that are sent to your web browser and stored on your computer's hard drive, to enhance your online experience. The cookies collect information about your use of our Services. If you do not want information collected through the use of cookies, most browsers allow you to automatically decline cookies or be given the choice of declining or accepting a cookie (or cookies) from a website. You may also wish to refer to 

Using pixel tags and other similar technologies. Pixel tags (also known as web beacons and clear GIFs) may be used to, among other things, track the online actions of users of the Services (including email recipients), measure the success of our marketing campaigns and compile statistics about usage of the Services and response rates. 

Targeted Outreach and Advertising.   We may work with third-party service providers to target advertisements and outreach to you based on your preferences or other information, in some cases combining data we collect from you through online cookies and other technologies with other de-identified data (such as a hashed, non-readable email or postal address). 

Analytics.  From time to time, we may use Google Analytics, which uses cookies and similar technologies to collect and analyze information about the use of the Services and report on activities and trends. You can learn about Google’s practices by going to, and opt-out of them by downloading the Google Analytics opt-out browser add-on, available at 

Aggregate Information. We use  aggregated information for data analysis and research to gain a greater general understanding of ostomy patients and their caregivers, which does not directly or indirectly identify an individual. 

  1. Data Security and Protections

We use reasonable organizational, technical and administrative measures reasonably designed to secure the information to protect Personal Information. We manage our information with third-party vendors providing industry-standard security controls. Unfortunately, no data transmission or storage system can be guaranteed to be 100% secure. If you want more information about whether your data is secure with us,  please immediately notify us in accordance with the “How to Contact Us” section below.


Retention. Ostomy 101, Inc. retains Personal Information that we receive for as long as necessary to fulfill the purpose(s) for which the information was collected, to provide our services and products, to pursue legitimate business purposes, to enforce our agreements, and comply with all applicable laws.


  1. Your Privacy Options and Access

Contact Preferences. We respect your privacy and the ways which you want us to contact you. An “Unsubscribe” button will be provided at the top or bottom of each email marketing communication sent by Ostomy 101, Inc., so that you may opt out of further email communications. However, this will not impair our ability to send transaction-related emails regarding our relationship and the services you have requested. Ostomy 101, Inc. offers the following options for restricting use and disclosure of your Personal Information and you may contact us at to tell us your preferences:

1. Do not contact me by postal mail.

2. Do not contact me by telephone.

3. Do not contact me by e-mail.

4. Do not share my contact information with other nonprofit organizations.

5. Do not contact me with fundraising requests supporting Ostomy 101, Inc..

6. Do not contact me at all.


Please note that if you opt-out of receiving e-mails, we may still send you important administrative messages, from which you cannot opt-out. 

Registrations and Subscriptions. If you register for an Ostomy 101 special event, you will receive communications related to that event regardless of your prior opt-out selections. If you no longer wish to receive event e-mails or other e-mail subscriptions, please opt-out using the “unsubscribe” link provided in the e-mail communication or you may contact us at to tell us your preferences.


Mobile Applications. You can stop collection of information by mobile applications by uninstalling the application. To discontinue the collection of geolocation data within a mobile application, you can modify your privacy settings on your mobile device.

To Request a Copy of your Personal Information. You may have the right to obtain confirmation regarding whether Ostomy 101, Inc. processes Personal Information about you and/or to request access to and receive information about the Personal Information that we maintain. To make such a request, please contact us as indicated below. 


In your request, please make clear what Personal Information you would like to review. For your protection, we may need to verify your identity before implementing your request. We will try to comply with your request as soon as reasonably practicable, consistent with applicable law.

Subject to applicable law, you may also have the right to object to the Processing of your Personal Information, and have the information blocked, anonymized, or deleted, as appropriate. Please note that in cases of deletion, limited personal information will remain to document the request. The right to access Personal Information may be limited in some circumstances by local law. To exercise these rights, please contact us through one of the methods below.

Subject to applicable law, although Ostomy 101, Inc. makes good faith efforts to provide individuals with access to their Personal Information, there may be circumstances in which Ostomy 101, Inc. is unable to provide access, including but not limited to: where the information would compromise others’ privacy or other legitimate rights, where the burden or expense of providing access would be disproportionate to the risks to the individual’s privacy in the case in question, or where the information is subject to legal privilege. If Ostomy 101, Inc. determines that access should be restricted in any instance, we will endeavor to provide you with an explanation of why that determination has been made and a contact point for any further inquiries. To protect your privacy, Ostomy 101, Inc. will take commercially reasonable steps to verify your identity before granting access to or making any changes to your Personal Information.


  1. Notices and Disclosures

Children’s Privacy. Ostomy 101, Inc. does not knowingly request or collect information from any person under 13 years of age without parental consent. If you believe that your child has submitted Personal Information to Ostomy 101, Inc. without your consent and you would like this info restricted or removed, please contact us using one of the methods below.  


Links to Third-Party Websites.  Our Services contain links to third-party websites whose privacy practices will likely be different from Ostomy 101, Inc.. This Privacy Statement does not address, and we are not responsible for, the privacy information or other practices of any third-parties, including any third-party operating any website or service to which the Services link. Links to other sites do not imply Ostomy 101, Inc.’s endorsement of the products or services or privacy or security practices of those websites. In addition, we are not responsible for the information collection, use, disclosure or security policies or practices of other organizations. 

For California Residents. California Civil Code Section 1798.83 permits California residents to request certain information regarding our disclosure of Personal Information to third parties for their direct marketing purposes during the preceding calendar year. To make such a request, please submit an Information Request Form or contact us using one of the methods provided in “How to Contact Us” below and specify the nature of your request. In addition, if you are a California resident under the age of 18 and a registered user of the Services, you may ask us to remove content or information that you have posted to the Sites by contacting us as indicated below. 


Lawful Basis. The laws in some countries require us to tell you about the lawful grounds we rely on to collect, use, disclose, and otherwise process your Personal Information. We have several different lawful bases for processing your Personal Information including: (a) as necessary to provide a service or information you request; (b) to comply with legal obligations; (c) based on your consent, and (d)   in support of our legitimate interests, where those interests are not overridden by your fundamental rights and freedoms. In many cases, we handle Personal Information because it furthers our legitimate business and charitable interests. This includes:

-Providing a safe user experience on our Site;

 -Customer service;

 -Sending communications to you to let you know about what we are doing with your donations and to solicit additional donations;

 -Protecting users, our employees, our volunteers, and our property;

 -Analyzing and improving our operations (e.g., optimizing the design and operation of our Site); and

 -Managing legal issues.


Jurisdiction and Cross-Border Transfer. The Services are controlled and operated by us from the United States and are not intended to subject us to the laws or jurisdiction of any state, country, or territory other than that of the United States. Your Personal Information may be stored and processed in the United States where our servers are located.  In certain circumstances, courts, law enforcement agencies, regulatory agencies or security authorities may be entitled to access your Personal Information. 

Information on Third-parties. If you disclose any Personal Information relating to other people to us, you represent that you have the authority to do so and to permit us to use the information in accordance with this Privacy Statement.


  1. How to Contact Ostomy 101, Inc.

Privacy Questions and Requests. If you have any questions about this Privacy Statement, wish to notify us of any desired restrictions, or believe your privacy rights may have been violated, please contact Ostomy 101, Inc. at:

Telephone: 858-336-4418 


Postal Mail:

Ostomy 101, Inc. 

ATTN: Security and Privacy Requests

5254 Ruette De Mer

San Diego, CA  92130



Security Breach or Fraud Notification. If you witness or become aware of any suspected privacy or security breach of our data or potentially fraudulent activity, please call us at 858-336-4418 or report by email at or “contact us” via the Web Site or Mobile App. 

Legal Matters.  To contact Ostomy 101, Inc. about legal matters or claims and lawsuits, contact either:

619-993-7731 or  (and write “Attention Legal Department” in the “RE” line)

  1. Updates to Our Privacy Statement. 

Ostomy 101, Inc. may modify this Privacy Statement at any time. When changes are made, we will update the “last modified” section at the top of our Privacy Statement. Your use of any of Ostomy 101, Inc.’s Services following these changes means that you accept the revised Privacy Statement. 

Last Modified: January 18 2020

bottom of page