Last modified: March 5, 2021

Welcome to PatientWorthy! We work hard every day to provide resources, information, and support for the rare disease community. We understand how important your privacy is and we want you to know up front that we DO NOT, and WILL NOT, sell your personal information. This privacy policy explains how we collect, protect, and process your personal information when you visit (the “Website”). This also applies to any personal information that we collect from you when we are interacting in other ways, such as through email, phone calls, or face-to-face encounters.

This policy does not apply to information collected by third parties, including our affiliates and subsidiaries, when you click on links to materials located on other third-party websites.

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

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:

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, or post content on the Website. Personal Information also may be collected from you when you send us correspondence, participate in surveys, or engage with us off-line, such as at conferences or other live events.

Registered users of the Website have the option to post comments on materials published on the Website and to submit user contributions. 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 cookies.

A cookie is a small file placed on the hard drive of your computer that collects certain information about your equipment, browsing actions, and patterns, including details of your visits to the Website, including traffic data, location data, logs, and other communication data, and the resources that you access and use on the Website. Cookies also 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.

Occasionally, we may post advertisements on our 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 cookies to collect Non-Personal Information about you using cookies and other automated data collection technologies. 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.
  • To fulfill any other purpose for which you provide it.
  • To carry out our obligations and enforce our rights arising from any contracts entered into 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.

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

  • Improve the Website.
  • Deliver a better and more personalized user experience.
  • Estimate our audience size and usage patterns.
  • Store information about your preferences, allowing us to customize the Website according to your individual interests.
  • Speed up your searches.

Disclosure of Your Information

We may disclose aggregated Non-Personal Information about our users without restriction.

We may disclose your Personal Information in one or more of the following situations:

  • To our subsidiaries and affiliates who assist in providing services to you.
  • 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 PatientWorthy’s assets, in which personal information held by PatientWorthy is among the assets transferred.
  • You provide express consent.
  • To comply with any court order, law, or legal process, including to respond to any government or regulatory request.
  • 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.

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 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 our 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.

Contact Information

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