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Privacy Policy

Welcome to! This website, including its web pages and subdomains (the “Website”), is owned and operated by Standing Up to POTS, Inc. (“SUTP”, “we”, or “us”), a not-for-profit organization. This Privacy Policy describes what information we collect from visitors to our Website (“you”) and how we use and share that information. This Privacy Policy also applies to information we collect via our donation platform, events, podcast, and other programs and services (collectively, our “Services”). This Privacy Policy does not apply to any sites that may now or in the future be linked to or from this Website that are not owned or controlled by us.

Please read this Privacy Policy carefully. By providing us with any Personal information (as defined below) or using our Website or Services, you consent to the collection, storage, use, and sharing of your Personal Information as described in this Privacy Policy.

What this Privacy Policy covers:

- How we define personal information

- What information we collect from you

- How we use your information

- How we share your information

- How you can control your personal information

- How we store your personal information

Definition of Personal Information

When you use our Website or Services, we may collect personal information about you (“Personal Information”). As used in this Privacy Policy, “Personal Information” means any information that could be used to identify a specific individual, such as name, address, email address, or phone number. Personal Information may include your medical history, if you voluntarily disclose that information to us.

What Information We Collect From You

In order to make certain features of the Website and Services available to you, we may ask you for Personal Information, and we may collect certain non-personal information about you and your computer, mobile phone, or other device used to access the Website or Services (“Usage Information”).

Personal Information

When you use the Website or Services, you may voluntarily provide Personal Information to us. The decision to provide us with Personal Information is entirely up to you - you may use our Website and its features without providing any Personal Information to us. We may receive Personal Information from you in the following situations:

  • Communications . When you send us an email or interact with us online, we may collect your name, email address, and the contents of your email.
  • Events . If you sign up to attend one of our events, such as our annual 5k walk, we will collect your name, address, and other registration information.
  • Forms . SUTP uses online forms to gather information about people who have expressed an interest in participating in certain SUTP programs, such as our podcast, POTScast™, or our social media Sunday Spotlight feature. We collect the name, email address, and other Personal Information, which may include health or medical information about you or your loved one with POTS, from participants who voluntarily submit the form.
  • SUTP Programs . If you have requested to participate in an SUTP program, such as participating in our POTScast™ podcast, we will collect Personal Information from you during that program, including your name and other information you voluntarily provide during the program. You have the ability to use a pseudonym or opt-out of certain questions, if you choose.
  • Grants . If you are a POTS doctor or researcher and you apply for one of our research grants, we will collect Personal Information about you, including your name, medical center or research affiliation, address, email address, and if you are approved for the grant and we need to wire grant funds to you, we will collect the account number to which the funds will be wired.
  • Other Sources. We may receive Personal Information about you if you use the Services provided by one of our service providers or vendors, including but not limited to our payment processor, e-commerce store, and event registration provider, or if you direct that third party to send Personal Information to us. For example, if you make a donation to SUTP online – Thank you! – our online payment processor will collect Personal Information from you and will share with us your name, address, email address, and the amount of your donation. We do NOT receive your bank account number, credit card number, or other financial account information. If you have questions about how any of our third party service providers uses your Personal Information, please read the third party’s privacy policy.

Usage Information

We also collect certain non-personal information about your device and your interaction with our Website which cannot be used to personally identify you. The following anonymous information is collected from you or your device when using the Website:

  • Device information . As is the case when you visit most websites, your visit to our Website triggers the automatic logging of certain anonymous information about your device or computer system, such as the type of browser you use, your operating system, and IP address.
  • Website Usage Information . We collect certain anonymous data related to your usage of the Website including, but not limited to, pages of the Website you viewed, referring, entering and exit pages, duration of your visit to the Website, frequency of visits to the Website, number of pages visited, the time and date of your visit, and other non-personal information about your interaction with the Website.
  • Cookie Technology . We may use cookies, web beacons, clear gifs, tags, and other similar tracking technology to collect information about your interaction with our Website and Services. Cookies” are small text files sent by Web servers to be stored on the computers of website users. These files often contain personalization settings or unique identifiers to keep track of your information and to help us understand the movements of users within and between websites. Cookies do not contain any Personal Information. Most web browsers are set to automatically accept cookies or allow other tracking technology. If you do not want to allow cookies, you can change your browser settings to refuse cookies. If you choose not to accept cookies, you can still use our Website. However, some of the features provided by our third-party service providers may not be available.

How We Use Your Information

Generally, we use Personal Information to provide our Services or fulfill your request. We may use your Personal Information and Usage Information for the following purposes:

  • respond to your email or other communication, or to provide the materials or information you requested;
  • consider your request to participate in our POTScast™, Sunday Spotlight, or other program;
  • review and process your research grant application;
  • send you research grant funds, if you have been approved for an SUTP grant;
  • record your donation to SUTP;
  • send you our newsletter or notices about our Services, events, programs, updates to our Website, or other relevant news;
  • register you for an event;
  • detect and prevent fraud;
  • personalize and deliver our Website and Services;
  • analyze general use of our Website and Services, Website traffic, and trends;
  • expand our Services, improve the features of our Website, and troubleshoot the Website and Services;
  • verify your identity;
  • detect and resolve security incidents;
  • comply with our legal obligations; and
  • any other purpose for which you expressly consent.

How We Share your Information

In order to make the Website and Services available to you and operate our organization, we will need to share your Personal Information and Usage Information with third parties. However, when we share your Personal Information, we only disclose the specific categories of Personal information required to provide the service for which the Personal Information was disclosed. SUTP does not sell, rent, or lease your Personal Information to any party for any purpose. We share your Personal Information in the following circumstances:

  • We share your Personal Information with third-parties that provide services to SUTP or on our behalf, such as our email distributor, online forms provider, and other third party service providers.
  • If you register for an event, we may share your Personal Information with third-parties that help schedule, plan, and operate the event.
  • If you have been awarded a research grant, we may share your Personal Information with our payment processor in order to deliver your funds.
  • When you consent by providing us with your Personal Information for our Sunday Spotlight, POTScast™, or other program, we will share your Personal Information, including your name and some information about your diagnosis, treatment, and other medical information that you voluntarily provide to us, with our social media followers, podcast subscribers, and visitors to our Website. We do not share your address or email address during our programs.
  • If you are a POTS doctor or specialist and you consent, we may share your name, medical group or affiliation, website, and area of specialty on our Website and social media.
  • Your Usage Information is shared with our analytics provider, Google Analytics.
  • In the event of a sale, merger, consolidation, change in control, transfer of substantial assets, reorganization, bankruptcy or liquidation, SUTP may have to disclose your Personal Information as part of that transaction.
  • We will share your Personal Information pursuant to a subpoena, court order, or legal process or to establish or exercise our legal rights or defend against legal claims.
  • When necessary to investigate or prevent illegal activities, suspected fraud, situations involving potential threats to the physical safety of any person, violations of our rights, or as otherwise required by law, we will disclose your Personal Information to the proper authorities. Additionally, we may share your Personal Information in order to protect the rights, property, assets, safety, and security of SUTP, our volunteers, followers, and users.

How You Can Control Your Personal Information

It is entirely your choice to provide us with any Personal Information. You can use our Website even if you choose not to provide us with your Personal Information. You may also request that we delete your Personal Information by contacting us using our contact details at the end of this Policy. Where possible, we will delete your Personal Information. However, we may need to retain some of your Personal Information for recordkeeping or other legitimate purposes.

You may opt out of emails from us by clicking the “unsubscribe” link in the email or contacting us.

How We Store Your Personal Information

We use industry standard technical, physical, and administrative safeguards to protect Personal Information. However, you should know that, due to the open communication nature of the Internet, no transmission is 100% secure. We cannot guarantee that communications to and from the Website will be free from unauthorized access by third parties, nor can we be responsible for Personal Information stolen from our servers by information harvesting software which may have the ability to scrape data. You send us Personal Information at your own risk.

Third Party Providers/Links

In order to provide you with information about POTS, our Website may link to third-party websites, such as news or medical journal articles, tips, and other resources. We may also link to third-parties that provide services to us, such as our donation payment processor, event registration provider, or other service providers.

Those third-party websites may collect Personal Information about you. SUTP does not control or endorse those websites or the information, products, or services found on those websites. We are not responsible for their collection or use of your Personal Information, or the contents, advertising, privacy policies or other material available on those third-party sites. We encourage you to read the privacy policies of any third-party websites you visit before you provide them with any Personal Information. Questions about the information collection practices of a third-party website should be directed to the third-party website administrator.

Social Features

Our Website or Services may include a feature that allows you to view or share content on social networks by initiating contact with such social network or allowing you to interact with us on the social network. By referencing or “tagging” SUTP or using hashtags that alert or identify SUTP in any social media posts, you consent to the publication of such material on our Website or on the SUTP social media accounts. Any information we collect from you via your use of social features is subject to this Privacy Policy, unless provided otherwise in writing. The social network site you choose to visit may also collect information from you. We are not responsible for their use of your Personal or non-personal information. You should review the privacy policies of any social networks you visit for more information on their use of your Personal Information.

How the Website Responds to “Do Not Track” Signals

Certain web browsers feature a “Do Not Track” tool which sends a signal to the website not to track the user’s activity. Because there is not a universal understanding of how to respond to “Do Not Track” signals, our Website does not recognize or respond to such “Do Not Track” requests from Internet browsers or mobile devices. However, we do not display or enable targeted advertising on our Website.

Changes to this Privacy Policy

We reserve the right to modify this Privacy Policy at any time. When we update the Privacy Policy, we will notify you by posting the new Policy here and updating the “Effective Date” at the top of this page. We encourage you to review this Policy regularly for updates. By continuing to use the Website or Service after we have posted the new Privacy Policy, you accept the changes.

Questions About Our Privacy and Information Security Practices?

If you have any questions about our privacy practices or procedures, please contact us at:

Standing Up to POTS
Attn: Privacy
P.O. Box 72
North Hampton, OH 45349