Last Updated: July 1, 2024
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 see our Data Privacy Framework: Consumer Privacy Policy for information about our processing of information from individuals in the EU, UK, and Switzerland.
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 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
When we talk about “Personal Information,” we mean any information which relates to an identified or identifiable living individual. Individuals might be identified by reference to a name, an identification number, location data, an online identifier (such as an IP address) or to other factors that are specific to them, such as their physical appearance.
We collect Personal Information from visitors who access the Website or interact with content posted on the Website. Categories of personal data we may collect and process about you include:
| Identity Data | First name; last name. |
| Contact Data | Mailing address; email address; telephone number; username; social media handle. |
| Demographic Data | Age or date of birth; gender; country; nationality; family status. |
| Image Data | Photos; video recordings. |
| Profile Data | Interests and preferences; contact/marketing preferences; feedback and survey responses. |
| Behavioral Data | Data relating to your browsing activity, obtained using cookies, pixel tags and other similar technologies; information about when your current or previous sessions started; details about any services you viewed through the Site. |
| Technical Data | IP address; browser type and operating system; geolocation, to ensure we’re showing you the correct notices and information; any other unique numbers assigned to a device. |
| Health Information | Health concerns; diagnoses; personal experiences living with a health condition that you share. |
How We Collect your Personal Information
We may collect and receive your personal data using different methods:
| Personal data you provide to us | You may give us your personal data directly, for example, when you obtain services via our Website, contact us with enquiries, complete forms on our Website, subscribe to receive our marketing communications or provide feedback to us. |
| Personal data we collect using cookies and other similar technologies | When you access and use our Website, we will collect certain Behavioral Data and Technical Data. We collect this personal data by using cookies and other similar technologies (see the Website Insight and Analysis section below). |
| Publicly available personal data | From time to time, we may collect personal data about you (Identity Data, Contact Data, or Publicly Available Data) that is contained in publicly available sources (including open-source data sets or media reports) or that you or a third party may otherwise make publicly available (for example through speeches at events or publishing articles or other news stories or posts on social media platforms). |
| Personal data received from third parties | We may receive personal data about you from third parties. Such third parties may include analytics providers, data brokers, third party directories and third parties that provide technical services to us so that we can provide our Website and our Services |
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.
Occasionally, we may post advertisements on the Website provided by third parties. These advertisements may provide a link to the third party’s web page. 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 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 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 insight and analysis to improve the Website and 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.
- 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.
Website Insight and Analysis
We and our third-party partners use cookies, web beacons, pixel tags and other similar technologies (which we generically refer to as “Cookies”) to collect data from the devices that you use to access the Website. The data that is collected includes Behavioral Data and Technical Data, and certain Profile Data. Please see our Cookie Notice for further information, including details of our third-party partners.
We and our third-party partners use this data to analyze how you use the Website and the services and programs available through the Website, and the effectiveness of the Website, including:
- to analyze how you use, and the effectiveness of, the Website;
- to count users who have visited the Website and collect other types of information, including insights about visitor browsing habits, which helps us to improve the Website;
- to measure the effectiveness of our content;
- to learn what parts of the Website are most attractive to our users, which parts of the Website are the most interesting and what kind of features and functionalities our visitors like to see;
- to help us understand the type of marketing content that is most likely to appeal to our visitors and customers.
Where your data is collected through the use of cookies that are not strictly necessary, we rely on consent to collect your personal data for the onward processing purpose. Please see our Cookie Notice for further details. In certain circumstances, we may rely on another lawful basis when we use your personal data collected via the use of cookies. For example, where we use personal data collected through the use of performance cookies to analyze how you use our Website, it is in our legitimate interest to use your personal data in such a way to improve our Website and Services.
Sharing Your Information
We only share Personal Information with third parties when we are legally permitted to do so. When we share Personal Information with others, we put contractual arrangements and security mechanisms in place to protect the Personal Information shared and to comply with our data protection, confidentiality and security standards and obligations. We may share 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
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 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.
We respect the privacy of users of the Website and will allow all users of the Website to do the following:
- Confirm whether we process their personal information.
- Access and delete certain personal information.
- Have their data transferred (data portability).
- Opt-out of personal data processing for targeted advertising and sales.
- Correct inaccuracies in their personal 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
