Introduction
The PAN Foundation (“we,” “us,” or “our”) believes in the importance of maintaining the integrity and privacy of personal information collected from you. We are committed to protecting your privacy, and this privacy policy is intended to describe our information collection and dissemination practices in connection with the PAN Foundation-owned and operated websites and other platforms (“websites”), or any website, platform or service that links to or refers to this policy.
Please review the entire policy and contact us if you have any questions. By using our websites, you consent to the collection, use, and disclosure of your information in accordance with the privacy policy.
In addition to this privacy policy, users of PAN Foundation online properties should also consult the Terms and Conditions.
About the privacy policy
This privacy policy explains what information we collect from you, why we collect it, how we use the information, what we disclose to others, and how we protect it.
This privacy policy applies to the following websites:
- panfoundation.org
- clinicaltrials.panfoundation.org
- fundfinder.panfoundation.org / fundfinder.org (Please note: This policy applies to fundfinder.panfoundation.org, except for tracking technologies. There are no tracking or third-party pixels on fundfinder.panfoundation.org / fundfinder.org).
- panapply.org (Please note: This policy applies to panapply.org, except for tracking technologies. There are no tracking or third-party pixels on panapply.org).
Definition of personal information
Personal information is anything that identifies, or can be used to identify, an individual person. Personal information also may include information that identifies your personal computer or mobile device.
Why we may collect your data
We collect data for the following purposes:
- To provide services to you
- To maintain, improve, and expand our services and resources
- To communicate with you about existing and new programs and services and for charitable donations
For more detailed information please also review the section below entitled “How we use the information we collect”.
What information we collect
Information you give us
PAN collects your personal information when it is voluntarily submitted by you or a third party working on your behalf.
That information may include:
- Data that may personally identify you, including: your name, postal address and zip code, billing address, shipping address, email address, home, work and mobile telephone numbers, age, date of birth, social security number, insurance type and policy number, IP address, credit or debit card number (for donation purposes only), medical conditions, healthcare provider, race, and information regarding your gender at birth and how you currently express your gender identity.
- Information that you provide by filling in forms on our websites, such as your PAN member ID, household size, annual income, tax forms, and health insurance. Some forms collect sensitive information, such as health and financial information, which may be necessary for us to provide our services to you. You can always call us to share this information instead of inputting it online.
- Information that you provide by filling in optional forms to share your story and experiences with the PAN Foundation. Some forms collect personal information, such as health information.
- Your responses to surveys that we might ask you to complete for research, program development, and marketing purposes.
- Details of donation transactions you carry out through our websites.
For certain activities, such as when you subscribe to PAN Foundation emails, share your story, use our online tools to advocate, take a survey, or contact us directly, we may collect some or all of the following types of information:
- Contact information, such as your full name, email address, mobile phone number
- Location information, such as city, state, and zip code.
- Any other information you choose to provide to us, which could include details about your health and treatment, and other personal data.
We may combine such information with other information we may already have about you.
Information we collect automatically
We collect information about you automatically as you navigate through and use some of our websites. Information collected automatically may include usage details, IP addresses, and information collected through cookies, web beacons, pixels tags, and other tracking technologies. Specifically, we may automatically collect:
- Usage details: Details of your visits to our websites, such as traffic data, location, logs, referring/exit pages, time spent on pages, date and time of your visit to or use of our websites, error information, searches performed on the site, initiating and completing a fillable form, and other communication data and the resources that you access and use on or in the websites.
- Device information: Information about your computer, mobile device, and Internet connection, specifically your IP address, operating system, and browser type.
- Location data: Information about your location collected through geolocation technology, including city, state, and country of the user’s IP address.
Your name, address, contact information, age and birthdate, or any other unique personal information is not collected passively by website visitor analytics tracking.
For more information about cookies, pixel tags, and similar technologies, please see the “Cookies” section below.
How we use the information we collect
We use the information we collect online for the following purposes:
- To fulfill your requests for information or other services. This includes responding to your inquiries, activating your transportation grant, or other program-related activities.
- To understand how our visitors use our websites and improve your online experience. Our goal is to improve the overall website user experience, enhance the usability of specific website features and content, improve website performance, optimize accessibility for all users, diagnose problems with our servers, and enhance system administration.
- To measure engagement with website content in the delivery of our organizational mission. PAN tracks trends in visitors to pages, over time, and in page groupings, as well as clicks on links to our resources and partners, to understand the reach and impact of our content and to make improvements to your experience.
- To contact you with relevant information about our programs, services, and resources, including for fundraising purposes. We value our relationship with you and are committed to keeping you updated about PAN’s programs and services. We use your voluntarily submitted name, email address, phone number and other personal information to communicate with you about events, organization updates, program announcements, and campaigns. As a charitable organization, we may also contact you for fundraising purposes. You can opt out at any time.
- To serve targeted, relevant advertisements on third party platforms. This helps us better reach you or people similar to you with important information about our programs and services.
How long we keep your personal information
We will retain your personal information for as long as is necessary to fulfill the purposes for which we obtained it.
Cookies and other tracking technologies
Cookies: A cookie is a small text file stored on your device (computer, phone, tablet, etc.) that contains information about your browser and online activity. This information often consists of a string of numbers and letters that uniquely identifies your device.
Local storage: Local storage enables our websites to store information locally on your device. Local storage may be used to improve your experience with our websites; for example, by enabling features, remembering your preferences, and speeding up our websites’ functionality.
Tracking pixels and web beacons: A tracking pixel, or web beacon, is a small, nonvisible graphic file used for the purpose of keeping track of user behavior, web traffic, and site conversions. A tracking pixel allows us to collect data relating to the use of our websites. Tracking pixels are also used to help inform advertisements on third-party platforms based on the activity tracked from your browser or device, to identify return traffic from third-party platforms such as social media applications, and for third-party web analytics.
Note: Advertising pixels are not used on panapply.org, clinicaltrials.panfoundation.org, fundfinder.org, or on the Find a Disease Fund pages of panfoundation.org relating to financial assistance programs.
Other similar tracking technologies: We may also use other tracking technologies, such as mobile advertising IDs and tags for similar purposes as described in this privacy policy.
Types of cookies
PAN collects website visit data through the usage of cookies, pixels (JavaScript code), and other similar technology from the site itself and from third parties when you visit our websites. Please see a description of each type of cookie and options you may have.
Strictly necessary cookies
These cookies are necessary for the website to function and cannot be switched off in our systems. They are usually only set in response to actions made by you which amount to a request for services, such as filling in forms. You can set your browser to block or alert you about these cookies, but some parts of the site will not work. These cookies do not store any personally identifiable information.
Performance cookies
These cookies allow us to count visits and traffic sources so we can measure and improve the performance of our site. They help us to know which pages are the most and least popular and see how visitors move around the site. All information these cookies collect is aggregated and therefore anonymous. If you do not allow these cookies, we will not know when you have visited our site.
Functional cookies
These cookies enable the website to provide enhanced functionality and personalization. They may be set by us or by third party providers whose services we have added to our pages. If you do not allow these cookies then some or all of these services may not function properly.
Targeted advertising cookies
These cookies may be set through our site by third-party advertisers. They may be used by those companies to build a profile of your interests and show you relevant adverts on other sites. They do not store directly personal information but are based on uniquely identifying your browser and internet device. If you do not allow these cookies, you will experience less targeted advertising. PAN uses third-party advertisers to reach new and relevant audiences with information and opportunities to engage with its programs and services.
Opting out of cookies and pixel tracking
You may opt to remove or block cookies by changing your browser settings or by adjusting them for panfoundation.org.
Please note that if you disable or opt out of all or any of these technologies, our ability to provide you with services and information about our programs may be affected. In addition, please note that the opt-out preferences that you set using these tools may be nullified if you delete your cookies after setting them. In this instance, you will have to opt out again.
In addition to managing your cookie preferences on panfoundation.org, you can alter the configuration of your browser directly to reject certain types of tracking, including cookies. Please note, however, that if you reject certain cookies, you may not be able to access and use all of the features on our websites. For more information about how to directly manage cookies, please visit aboutcookies.org.
You may also control your online behavioral advertising preferences and opt out from having your data processed by certain advertising and marketing companies by visiting their websites.
Email communications, newsletter, text messaging, and related services
Our websites provide you with the opportunity to receive communications from us or third parties. For example, you can sign up for a free PAN Foundation email newsletter and regular updates. We use your voluntarily submitted name, email address, and other personal information to communicate with you about events, organizational updates, program announcements, new and helpful resources, and campaigns. As a charitable organization, we also may ask you for a donation. Donations are always optional.
You may use the unsubscribe link in our marketing emails if you wish to stop receiving marketing emails from us. If you have an active grant with the PAN Foundation, you will still receive essential communications regarding your grant, even if you unsubscribe from marketing emails.
Email communications that you send to us via the Contact Us form on our websites may be shared with a customer service representative, employee, or agent that is most able to address your inquiry. We make every effort to respond in a timely fashion once communications are received.
Note that email communications that you send us via the Contact Us form or our online forms are not automatically encrypted, and it is possible that unencrypted email communications with us may be accessed or viewed by another internet user while in transit to us.
Text messaging
Our websites also provide you with the opportunity to receive communications from us through text messaging, or SMS. You can unsubscribe from text messages from us at any time. You may reply to a text message with “STOP” and you will automatically be unsubscribed.
Surveys
We occasionally survey visitors to our site and our email and SMS subscribers. The information from these surveys is used to help us understand the needs of our visitors so that we can improve our services.
We generally do not ask for information in surveys that would personally identify you; if we do request contact information for follow-up, you may decline to provide it. If survey respondents provide personal information (such as an email address) in a survey, it is shared only with those people who need to see it, which may include third parties who perform data management services for our site. Those third parties have agreed to keep all data from surveys confidential.
Donations on our website
Donations submitted through panfoundation.org are processed securely on our website using a third-party platform, FundraiseUp. We may use this information to send you receipts and records, donation solicitations, and organizational updates and announcements. The PAN Foundation may collect contact information provided through our donation forms, prior to donations being completed. Passive data collected about donations made on our website include visitor and campaign sources, number of donations initiated and completed, and pages visited.
Determining financial assistance program eligibility
Personal information you submit under the “eligibility wizard” feature on the PAN website is used only to determine whether you meet the eligibility criteria for assistance from one of our disease funds. Personal information submitted by you is not collected by us until you apply for assistance or sign up for our services.
Information sharing with third parties
We are committed to protecting your privacy and transparently communicating when and with whom we may share the information we collect. We may share your deidentified and personal information with third parties, including ones that provide cookies, pixels, and other tracking technology to us or that work in industries related to PAN.
De-identified information
We may share aggregate or your de-identified information with third party service providers, such as Google Analytics, which helps us improve our website.
Personal information
We may share your personal information with our third-party contractors, so they can use your information to assist us in providing services to you. These third-party contractors include vendors and service-providers that help us with specialized services, including claims administration, donation processing, customer service, email and SMS deployment, business analytics, advertising and marketing, web hosting, and data processing.
Third parties that utilize cookies, pixels, and other tracking technologies may also collect your information for their purposes.
We may also share your information for legal purposes. We may disclose your information to government authorities, courts, and law enforcement agencies, and to respond to legally authorized information requests, corporate audits, and security threats.
We will never sell your information to any third-party businesses or organizations.
Donor privacy
We will never sell, share, or trade our donors’ names or personal information with any other entity, nor send mailings to our donors on behalf of other organizations.
Security
How we protect your information
We use technical and administrative safeguards to protect your personal information from unauthorized access, use, loss, or destruction. For example, we employ internet security protocols that provide privacy protection and authentication. We restrict access to your personal information to people who need to know your information to perform their job duties.
Still, using the internet requires caution: although we have created secure and reliable websites to protect your privacy, we urge you to always exercise caution when providing your personal information. Your efforts to sign off when finished using a shared computer and logging out of websites when using personal information are examples of protective measures you can apply.
Donation security
We use security measures to safeguard your online donations to the PAN Foundation. We use Fundraise Up as an online donation platform. All donation data collected is subject to the provisions of the General Data Protection Regulation (“GDPR”), the California Consumer Privacy Act of 2018 (“CCPA”), and other applicable privacy laws. Non-personal information that is collected remains anonymous or non-personally identifiable. All personally Identifiable Information (PII) is encrypted.
Financial information, such as banking information or credit card number, name, CVV code, or expiration date, is collected and stored by a third-party payment processor. Financial information is not stored by Fundraise Up.
The following are the key security measures we use to protect your donation-related activities:
- PAN’s donation pages’ service provider is Payment Card Industry Data Security Standard (PCI-DSS) compliant.
- The transaction is secure and private when you donate online to support PAN’s mission with your bank or credit card.
- PAN’s donation pages service provider is PCI-1-Level-1-certified.
- This is the highest level of compliance that ensures the top security level to protect your information.
- To maintain the above security standards, we work with third party PCI-DSS-qualified security assessors to audit all servers, workstations, network connections, and products.
Minors
Children’s online safety and privacy are paramount to us. We follow the guidelines set forth by the Children’s Online Privacy Protection Act of 1998 and its accompanying Federal Trade Commission regulation that protects the privacy of children online. We do not intentionally collect information from or market our sites to anyone under 13. However, when an application for assistance or services is submitted for a minor, PAN may collect personal information with proper authorization.
Links to third-party sites
PAN may provide links to other independent websites as a convenience to you. This privacy statement applies solely to the information collected by PAN on our websites. We are not responsible for the privacy practices of any third-party websites.
Updates
PAN reserves the right, at its complete discretion, to make updates to this policy at any time. It is your responsibility to check for any changes. Your continued use of PAN’s websites following any posted revisions means that you accept these updates.
Policy last updated: 11/15/2024
Contact us
We welcome your questions and comments regarding this privacy policy and the use of your information.
Contact us to update or correct your information, to opt out of future contact with you, or with any questions concerning this privacy policy.
Call us: 1-866-316-7263