Privacy Notice

Last modified: April 13, 2023

Welcome to PatientWorthy®! We work hard every day to provide resources, information, and support for the rare disease community. PatientWorthy (“Company” or “We”) respects your privacy and is committed to protecting it through our compliance with this Privacy Notice.

This Privacy Notice explains how we collect, use, maintain, and protect the personal information you provide when you visit patientworthy.com (the “Website”). This Privacy Notice also applies to any personal information that we collect from you when we interact in other ways, such as through email or phone calls. This Privacy Notice does not apply to information that may be collected by third parties, such as other users of the Website, advertisers, and business partners, when you click on links posted on the Website that direct you to other websites.

Please read this Privacy Notice carefully. If you do not agree with our policies and practices, please do not use the Website. By using the Website, you agree to this Privacy Notice. We may change this Privacy Notice from time to time, so please check this Privacy Notice periodically. Your continued use of this Website after we make changes is considered acceptance of those changes.

WE DO NOT, AND WILL NOT, SELL any personal information collected from users of the Website. For information about how we use and disclose your information, please see How We Use Your Personal and Non-Personal Information and Disclosure of Your Information below.

Children Under the Age of 13

The Website is not intended for children under 13 years of age. Any stories on the Website about the experiences of patients who are under the age of 13 are intended solely for the educational use and benefit of parents/legal guardians of children with rare diseases. If you are under the age of 13, you may neither register on the Website nor participate in any of the services or features we provide. We do not knowingly collect personal information from children under the age of 13. If we learn we have collected or received personal information from a child under the age of 13, we will delete that information. If you believe we might have any information from or about a child under the age of 13, please contact us at: [email protected]

California residents under 16 years of age may have additional rights regarding the collection of their personal information. Please see Your State Privacy Rights for more information.

Personal Information We Collect and How We Collect It

“Personal Information” includes any information that could be used to identify you, such as your name and contact information, and any information about yourself that you voluntarily share with us, such as your personal experiences, health concerns, diagnoses, and topics of interest. Personal Information is collected when you register on the Website, subscribe to any of our services, fill out a questionnaire, respond to a survey, and post content on the Website. We also may collect Personal Information when you send us correspondence, participate in one of our surveys, or engage directly with us, whether on- or off-line.

Registered users of the Website have the option to post comments on articles, stories, and other materials on the Website and to submit user contributions to be published on the Website. All comments and user contributions are displayed publicly on the Website and, therefore, are visible to anyone who visits the Website. Therefore, please be careful not to include any Personal Information in your comments or user contributions that you do not want to be made public. We are not responsible for the Personal Information that you disclose through your comments or user contributions.

Non-Personal Information We Collect and How We Collect It

“Non-Personal Information” includes information about your internet connection, the equipment you use to access the Website, your IP address, usage details, and similar information that reflects how you interact with the Website but does not include any Personal Information. Non-Personal Information is collected automatically as you navigate through the Website and through automatic data collection technologies, such as cookies and web beacons.

A cookie is a small file placed on the hard drive of your computer that collects certain information about your equipment, browsing actions, patterns, and details of your visits to the Website, such as traffic data, location data, logs, and other communication data, and the resources that you access and use on the Website. Cookies also may collect information about your computer and internet connection, including your IP address, operating system, and browser type. The information collected through cookies is statistical in nature and does not include Personal Information, but we may maintain it or associate it with Personal Information to help us improve the Website and deliver a better, more personalized experience. You may refuse to accept browser cookies by activating the appropriate setting on your browser. However, if you select this setting, you may not be able to access certain parts of the Website. Unless you have adjusted your browser setting so that it will refuse cookies, our system will issue cookies when you direct your browser to the Website.

Web beacons, also known as pixel tags, clear gifs, and single-pixel gifs, are small electronic files that allow the Company to collect data about the number of users who have visited the pages of our Website or other similar website statistics. Cookies and web beacons do not collect personal information automatically, but the information they collect may be tied to personal information about you that you have provided to us.

Occasionally, we may post advertisements on the Website provided by third parties. These advertisements may provide a link to these third parties’ web pages. We do not share any of your Personal Information with any third parties. However, these third parties may use automated data collection tools such as cookies to collect Non-Personal Information about you. 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 Personal and Non-Personal Information

The Personal Information we collect from or about you is used in one or more of the following ways:

• To present the Website and its contents to you.
• To provide you with information, products, or services that you request from us.
• To provide information about services that may be of interest to you, including services provided by our business partners and affiliates.
• To fulfill any other purpose for which you provide it.
• To carry out our obligations and enforce our rights arising from any contracts entered between you and us.
• To notify you about changes to the Website or any products or services we offer or provide though it.
• In any other way we may describe when you provide the information.
• For other purposes when you provide your consent.

We also may use your information to contact you about services and programs that may be of interest to you, such as patient advocacy opportunities. If you do not want us to use your information in this way, please contact us at [email protected]. For more information see Choices About How We Use and Disclose Your Information.

The Non-Personal Information we collect may be used in one or more of the following ways:

• To improve the Website.
• To deliver a better and more personalized user experience.
• To estimate our audience size and usage patterns.
• To store information about your preferences, allowing us to customize the Website according to your individual interests.

Disclosure of Your Information

We may disclose aggregated Non-Personal Information about our users and information that does not identify an individual without restriction.

We do not and will not sell your Personal Information. We may share your Personal Information only in one or more of the following situations:

• You provide consent. We work with a variety of advocacy organizations and other third parties who may provide services of interest to you. We will always obtain your consent before we share your Personal Information.
• We engage service providers to support our business operations. Any service provider we use is contractually required to keep any personal information confidential and to use any personal information only for the purposes for which it was disclosed.
• In the event of a merger, divestiture, restructuring, or other sale or transfer of some of or all our assets, Personal Information will be shared subject to confidential and nondisclosure obligations.
• To comply with any court order, law, or legal process, including to respond to any government or regulatory request. However, we will limit any disclosure to the minimum required by law.
• To enforce or apply our terms of use and other agreements.
• If we believe disclosure is necessary or appropriate to protect the rights, property, or safety of PatientWorthy, our customers, or others.

Choices About How We Use and Disclose Your Information

You may refuse to accept browser cookies by activating the appropriate setting on your browser. However, if you select this setting you may be unable to access certain parts of the Website. Unless you have adjusted your browser setting so that it will refuse cookies, our system will issue cookies when you direct your browser to the Website. We do not control third parties’ collection or use of your information to serve interest-based advertising. However, these third parties may allow you to choose not to have your information collected or used in this way. You can opt out of receiving targeted ads from members of the Network Advertising Initiative (“NAI”) on the NAI’s website.

Residents of certain states, such as California, Colorado, Connecticut, Nevada, Utah, and Virginia, may have additional personal information rights and choices. Please see Your State Privacy Rights for more information.

Accessing and Correcting Your Information

You can review and change your personal information by logging into the Website and visiting your account profile page. You also may send us an email at [email protected] to request access to, correction of, or deletion of 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 contribution from the Website, copies of your user contribution may remain viewable in cached and archived pages or might have been copied or stored by other Website users. Proper access and use of information provided on the Website, including User Contributions, is governed by our Terms of Use.

Data Security

We have implemented technical and procedural safeguards designed to secure your Personal Information and protect it from accidental loss and from unauthorized access, use, alteration, and disclosure. These are the same technical and procedural safeguards that we use to secure and protect our own confidential information. All information you provide to us is stored on our secure servers behind firewalls.

Unfortunately, the transmission of information via the internet is not completely secure. Although we do our best to protect your Personal Information, we cannot guarantee the security of your Personal Information transmitted to the Website. Any online or electronic transmission of Personal Information is at your own risk. We are not responsible for circumvention of any privacy settings or security measures contained on the Website.

Your State Privacy Rights

State consumer privacy laws may provide their residents with additional rights regarding our use of their personal information. To learn more about California residents’ privacy rights, please visit CCPA and CPRA Privacy Notice for California Residents.

Colorado, Connecticut, Virginia, and Utah each provide their state residents with rights to:

• Confirm whether we process their personal information.
• Access and delete certain personal information.
• Data portability.
• Opt-out of personal data processing for targeted advertising and sales.

Colorado, Connecticut, and Virginia also provide their state residents with rights to:

• Correct inaccuracies in their personal information, considering the nature of the processing purpose for the information.
• Opt-out of profiling in furtherance of decisions that produce legal or similarly significant effects.

To exercise any of these rights, please submit your request via email to [email protected], or call our toll-free privacy line at 1-844-819-6925.

Changes to our Privacy Notice

We will post any changes to our Privacy Notice on this page. If we make any material changes to how we treat our users’ personal information, we will notify you via email or through a notice on our website home page. The date that the Privacy Notice 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 for you, and for periodically visiting the Website and this Privacy Notice to check for changes.

Contact Information

To ask questions or comment about our Privacy Notice and our privacy practices, contact us at: [email protected]
or via our toll-free number:
1-844-819-6925