App Privacy Policy

Last modified: May 8, 2020


RareGuru (sometimes referred to as the “Company” or “we”, “us” or “our”) is a unique community of people who share personal and sensitive health information with others, including their medical conditions and illnesses and struggles of living with rare diseases. We understand that often-intimate details are part of a life contending with rare diseases and ailments. Accordingly, we take respecting your privacy seriously and are committed to protecting it through our compliance with this policy.

This policy describes:

This policy applies only to information we collect in the App and in email, text, and other electronic communications sent through or in connection with the App.

This policy DOES NOT apply to information that:

Our websites and apps, and these other third parties may have their own privacy policies, which we encourage you to read before providing information on or through them.

Please read this policy carefully to understand our policies and practices regarding your information and how we will treat it. If you do not agree with our policies and practices, do not download, register with, or use this App. By downloading, installing, registering with, or using this App, you agree to this privacy policy. This policy may change from time to time (see Changes to Our Privacy Policy). Your continued use of this App after we revise this policy means you accept those changes, so please check the policy periodically for updates.

Children Under the Age of 13

The App is not intended for children under 13 years of age. No one under age 13 may provide any information on this App and we do not knowingly collect personal information from children under 13. If we learn we have collected or received personal information from a child under 13 without verification of parental consent, we will delete that information. If you believe we might have any information from or about a child under 13, please contact us at

Information We Collect and How We Collect It

We collect information from and about users of our App:

Information You Provide to Us

When you download, register with, or use this App, we may ask you provide information by which you may be personally identified, or any other identifier by which you may be contacted online or offline ("personal information"). Examples of this type of information include:

We may also ask you to provide, or you may elect to provide, additional information which may be considered personal information:

You may also elect to include or post certain health or medical data, which, by their natures, could identify you personally. RareGuru provides Users the opportunity to share information about themselves when using the App through private messaging with other Users or groups of Users (collectively, "User Contributions”). Please use common sense when using this feature. Your User Contributions are transmitted to others at your own risk. Below are examples of commonly shared information:

Importantly, although you may set certain privacy settings for your information, please be aware that no security measures are perfect or impenetrable. We emphasize this due to the sensitive nature of health and medical information and personal details often shared on the App. Additionally, we cannot control the actions of other users, or of third parties with whom you may choose to share your User Contributions. Therefore, we cannot and do not guarantee that your User Contributions will not be viewed by unauthorized persons.

Automatic Information Collection and Tracking

We may also ask you to provide or may collect information that is about you but individually does not identify you, such as device type, browser type, plugin details, time zone, and screen size.

When you download, access, and use the App, it may use technology to automatically collect:

If you do not want us to collect this information do not download the App or delete it from your device.

Information Collection and Tracking Technologies

The technologies we use for automatic information collection may include:

Third-Party Information Collection

When you use the App or its content, certain third parties may use automatic information collection technologies to collect information about you or your device. These third parties may include:

These third parties may use tracking technologies to collect information about you when you use the App. The information they collect may be associated with your personal information or they may collect information, including personal information, about your online activities over time and across different websites, apps, and other online services websites. They may use this information to provide you with interest-based (behavioral) advertising or other targeted content, including related to health, medical, research, and similar fields.

We do not control these third parties' tracking technologies or how they may be used. If you have any questions about an advertisement or other targeted content, you should contact the responsible provider directly.

How We Use Your Information

We use information that we collect about you or that you provide to us, including any personal information, to:

The usage information we collect helps us to improve our App and to deliver a better and more personalized experience by enabling us to:

We use regional location information we collect to find User matches in your geographic area.

Disclosure of Your Information

We may disclose aggregated information about our users, and information that does not identify any individual or device, without restriction.

In addition, we may disclose personal information that we collect or you provide:

Your Choices About Our Collection, Use, and Disclosure of Your Information

We strive to provide you with choices regarding the personal information you provide to us. This section describes mechanisms we provide for you to control certain uses and disclosures of over your information.

Accessing and Correcting Your Personal Information

You can review and change your personal information by logging into the App and visiting your account profile page.

You may also send us an email at to request access to, correct, or delete any personal information that you have provided to us. We cannot delete your personal information except by also deleting your user account. We may not accommodate a request to change information if we believe the change would violate any law or legal requirement or cause the information to be incorrect.

If you delete your User Contributions from the App, copies of your User Contributions may remain viewable in cached and archived pages, or might have been copied or stored by other App users. Proper access and use of information provided on the App, including User Contributions, is governed by our terms of use located at User Agreement.

Data Security

We have implemented measures designed to secure your personal information from accidental loss and from unauthorized access, use, alteration, and disclosure. We divide these features into two kinds: 1) Server-Side Security Features, and 2) User-Side Security Features.

Server Side Security Features include the following:

User-Side Security Features include the following:

The safety and security of your information also depends on you. It goes without saying, but at all times, please use common sense.

You are responsible for keeping your password, pin login, and any other security code or feature confidential. We ask you not to share your password with anyone. Importantly, we urge you to be careful about giving out information in public areas of the App like message boards and in private messaging. The information you share in public areas may be viewed by any user of the App.

Unfortunately, the transmission of information via the internet and mobile platforms is not completely secure. Although we do our best to protect your personal information, we cannot guarantee the security of your personal information transmitted through our App. Any transmission of personal information is at your own risk. We are not responsible for circumvention of any privacy settings or security measures we provide.

Transfers of Personal Information to Other Countries

The personal information we process, and all associated systems, including registration, is housed on servers located in the United States. If you are located outside of the United States, please be aware that your personal information that we collect or transmitted through our App will be processed and stored in the United States (the data protection and privacy laws in the United States may offer a lower level of protection than in your country/region).

By downloading and using the App, you agree to the transfer, storage and processing of your personal information in the United States. Where and as required, we will seek your explicit consent.

Notice to Residents of the European Union

For our European users, please click on the following link to review our GDRP Privacy Notice.

Changes to Our Privacy Policy

We may update our privacy policy from time to time. If we make material changes to how we treat our users' personal information, we will post the new privacy policy on this page with a notice that the privacy policy has been updated and notify you by email and/or text message to the email address and/or phone number specified in your account, or by an in-App alert the first time you use the App after we make the change.

The date the privacy policy was last revised is identified at the top of the page. You are responsible for ensuring we have an up-to-date active and deliverable email address and/or phone number for you and for periodically visiting this privacy policy to check for any changes.

Contact Information

To ask questions or comment about this privacy policy and our privacy practices, contact us at:

RareGuru, LLC
3800 West Bay to Bay Blvd.
Suite #21
Tampa, FL 33629

or via our toll-free number:
+1 (813) 895-7360

If you have any concerns or complaints please email Bennett Barrow at

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