App Privacy Policy

Last modified: May 8, 2020

Introduction

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:

• The types of information we may collect or that you may provide when you download, install, access, and/or use the RareGuru Mobile App (the "App"); and
• Our practices for collecting, using, maintaining, protecting, and disclosing that information.

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:

• We collect offline or on any other Company apps or websites, including websites you may access through the App; or
• You provide to, or is collected by, any third party (see Third-Party Information Collection).

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 bennett@rareguru.com.

Information We Collect and How We Collect It

We collect information from and about users of our App:

• Directly from you when you provide it to us, including at the time you register or update your profile with us and when you post written content on our App; and
• Automatically when you use the 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:

• Name and city, state and country of your residence, as collected as part of registration or in a User’s Account Information;
• Email address, as collected as part of registration or in a User’s Account Information;
• Personal photograph for your User profile;
• Password, as collected as part of registration or in a User’s Account Information;
• Date of birth, as collected in your profile; and
• IP Address.

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

• Information that you provide by filling in forms in the App. This includes information provided at the time of registering to use the App, changing or updating your profile and posting material. There may also be special occasions when we ask you for information from you, such as when you enter a contest or participate in a promotion sponsored by us, and when you report a problem with the App;
• Records and copies of your correspondence (including email addresses and phone numbers), if you contact us; and
• Your responses to surveys that we might ask you to complete for research purposes.

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:

• Biographic and demographic information, e.g. non-identifying photographs, biography, gender, age, location (city, state/province, and country);
• Condition/disease information, e.g. diagnosis date, first symptom, family history;
• Symptom information, e.g. severity, duration;
• Outcome metrics over time;
• Sensor information, e.g. personal activity trackers;
• Laboratory results and biomarkers, e.g. CD-4 count, viral load, creatinine, voice features, images;
• Genome wide single nucleotide polymorphism analyses, whole exome sequencing analyses, or whole genome sequencing analysis
• Status of individual genes or variants (mutations);
• Individual and aggregated structured survey responses;
• Non-identifying information shared via free text fields, e.g. the forums, treatment evaluations, surveys, annotations, journals, feeds, adverse event reports; and
• Connections to other people on the App, e.g. invited care team members, mentors, feeds, subscriptions.

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:

• Usage Details. When you access and use the App, we may automatically collect certain details of your access to and use of the App, including traffic data, location data, logs, and other communication data and the resources that you access and use on or through the App.
• Device Information. We may collect information about your mobile device and internet connection, including the device's unique device identifier, IP address, operating system, browser type, mobile network information, and the device's telephone number.
• Stored Information and Files. The App also may access metadata and other information associated with other files stored on your device. This may include, for example, photographs, audio and video clips, personal contacts, and address book information.
• Location Information. This App collects real-time information about the regional location of your device.

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:

• Cookies (or mobile cookies). A cookie is a small file placed on your smartphone. It may be possible to refuse to accept mobile cookies by activating the appropriate setting on your smartphone. However, if you select this setting you may be unable to access certain parts of our App.
• Web Beacons. Pages of the App, website, and our emails may contain small electronic files known as web beacons (also referred to as clear gifs, pixel tags, and single-pixel gifs) that permit the Company, for example, to count users who have visited those pages or opened an email and for other related app statistics (for example, recording the popularity of certain app content and verifying system and server integrity).

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:

• Your mobile device manufacturer;
• Your mobile service provider; and
• Your internet service provider.

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:

• Provide you with the App and its contents, and any other information, products or services that you request from us;
• Fulfill any other purpose for which you provide it;
• Carry out our obligations and enforce our rights arising from any contracts entered into between you and us; and

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

• Estimate our audience size and usage patterns;
• Store information about your preferences, allowing us to customize our App according to your individual interests;
• Speed up your searches; and
• Recognize you when you use the App.

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:

• To our subsidiaries and affiliates;
• To contractors, service providers, and other third parties we use to support our business and who are bound by contractual obligations to keep personal information confidential and use it only for the purposes for which we disclose it to them;
• To a buyer or other successor in the event of a merger, divestiture, restructuring, reorganization, dissolution, or other sale or transfer of some or all of RareGuru, LLC's assets, whether as a going concern or as part of bankruptcy, liquidation, or similar proceeding, in which personal information held by RareGuru, LLC about our App users is among the assets transferred;
• To fulfill the purpose for which you provide it;
• For any other purpose disclosed by us when you provide the information;
• With your consent;
• To comply with any court order, law, or legal process, including to respond to any government or regulatory request;
• To enforce our rights arising from any contracts entered into between you and us; and
• If we believe disclosure is necessary or appropriate to protect the rights, property, or safety of RareGuru, LLC, our users, or others. This includes exchanging information with other companies and organizations for the purposes of fraud protection and credit risk reduction.

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.

• Tracking Technologies. You can set your browser to refuse all or some browser cookies, or to alert you when cookies are being sent. If you disable or refuse cookies or block the use of other tracking technologies, some parts of the App may then be inaccessible or not function properly.
• Location Information. You can choose whether or not to allow the App to collect and use real-time information about your device's location through the device's privacy settings. If you block the use of location information, some parts of the App may become inaccessible or not function properly.

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 bennett@rareguru.com 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:

• All data in transit will be secured over “Hypertext Transfer Protocol Secure” (HTTPS) using “Transport Layer Security 1.2” (TLS1.2) or higher;
• Virtual server instances will use firewalls to allow appropriate access;
• Databases will be encrypted using Amazon Web Services (AWS) hardware whole disk encryption;
• Passwords will be stored using current cryptographic hash methods; and
• Hosting accounts will be protected with strong complex passwords and 2-factor authentication where available.

User-Side Security Features include the following:

• Each user is required to create an account with an email address and create and use a complex password to access their confidential information;
• On returning to the RareGuru App after login, the user will be prompted by either a biometric or a pin code login before confidential information will be displayed;
• No confidential information will be stored on the device—information viewed while using the app will be stored in volatile memory only; and
• All data in transit will be secured over HTTPS using TLS1.2 or higher.

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 bennett@rareguru.com.