Privacy Policy
Last updated: 11/15/2024
The Pancreatic Cancer Action Network (PanCAN) values your trust and is committed to protecting your privacy. Please read the following Privacy Policy to understand how we collect, use, and share your information. When you use PanCAN websites or participate in PanCAN sponsored programs, you consent to the use of your personal information by PanCAN in the manner specified in this Privacy Policy. This Privacy Policy may change periodically, so please check back from time to time. In order to fully understand your rights, we encourage you to read this entire Privacy Policy as well as our Terms of Use.
This Privacy Policy applies to all information collected through any of your communications with PanCAN, including information we may collect in interacting with you, information collected through PanCAN websites or mobile applications (“Apps”), and any other information about you that we may collect or receive from third parties. By accessing any of our services or otherwise communicating or providing information to PanCAN, you accept and agree to the practices described in this Privacy Policy.
Disclosure Statement
The Pancreatic Cancer Action Network is registered as a 501©3 nonprofit organization. Contributions to the Pancreatic Cancer Action Network are tax-deductible to the extent permitted by law. Please consult your tax advisor regarding specific questions about your deductions. The Pancreatic Cancer Action Network’s tax identification number is #33-0841281.
What types of personal information do we collect from you?
PanCAN collects information in support of our mission to fight pancreatic cancer. The information you provide allows us to personalize your interactions with PanCAN, so that we can better respond to your requests, understand your needs, and provide you with information and resources. In general, the type and amount of information we collect will depend on how you choose to interact with PanCAN. For instance, if you are a patient or caregiver contacting us for assistance, we will need different information to assist you than if you are using our website to donate to PanCAN.
Personal Information. When you communicate with PanCAN, PanCAN may collect information that identifies you as an individual or which is linked or linkable to you as an individual (“Personal Information”). Examples of Personal Information include your name, email address, mailing address, phone number, payment details, personal preferences, occupation, health information such as your relationship to pancreatic cancer, and other account-related information.
Personal Information does not include any information posted, shared or sent by or to you in any public forum, or any other information collected by PanCAN that is publicly available when PanCAN collected it.
Here are categories of Personal Information that PanCAN collects:
- Contact Information and Preferences. We may request contact information such as your name, mailing address, telephone number, e-mail address, and your preferences for how you would like to be contacted by PanCAN. We may use third-party services to supplement or to ensure accuracy of contact information./li>
- Demographic Information. We may request limited demographic information such as your gender, race or ethnicity, marital status, geographic location, and/or primary language. We may also use publicly available data or third-party services to supplement this information.
- Health Information. With patient permission, we collect health data through various programs and initiatives with the goals of progressing pancreatic cancer research and improving patient outcomes. We may request certain health information about you, such as your relationship to pancreatic cancer or other cancers, if applicable, your type of pancreatic cancer or other cancers, date of diagnosis, stage, or current treatment. PanCAN may use these data, in de-identified form, for research and educational purposes in support of our mission. We may transmit your health information electronically for the uses and/or disclosures described in this Privacy Statement. If you enroll in a research study, we may request more detailed information. If you wish to access your health data, correct any inaccuracies within these data, restrict the use of your health data, or request to have your stored health data deleted, please Contact Us.
- Financial Information. If you donate to PanCAN or make a retail purchase on a PanCAN Site, we will collect payment information such as your credit card number to process your transaction. We may also collect the name of your employer, if you would like to initiate a process for your employer to make a matching donation. We may use a third-party payment service to process your payments. We will retain your credit card information only for as long as necessary to process the transaction.
- Call Recordings and Transcripts. If you contact PanCAN for information or assistance by calling our Patient Services Helpline or Customer Service, we may record your call or maintain a transcript of any chat for training and quality assurance purposes.
Aggregate Information. When you access a PanCAN service, we might also automatically collect information about your visit that does not reveal your specific identity or does not directly relate to an identifiable individual (“Aggregate Information”). For example, we may record how many users log on to a service. PanCAN and its third-party service providers use tools and services such as cookies, pixel tags, AdWords, and Google Analytics for tracking, reporting, and analyzing website activity. A combination of these is used to operate, evaluate, and improve our programs, and to perform other internal functions.
How do we collect personal information about you?
PanCAN may collect Personal Information in a variety of instances when you engage or communicate with us. For example, we may collect information about you in the following circumstances:
Login. We may request Personal Information whenever you log in to your account. We reserve the right to request any additional information necessary to establish and maintain your account.
Requests for Information and Resources. When you contact PanCAN for information and resources, we will collect the Personal Information you provide in order to assist you.
Donations. If you make a donation to PanCAN, we will collect Personal Information from you that may include: your name, address, telephone number, and/or email address so that we can send you a receipt and/or thank you for your donation. We may also collect financial information necessary to process your donations, and we also ask for information about your relationship to PanCAN and/or pancreatic cancer.
Patient Services. We may collect information from you necessary to perform services for you. We may ask you for contact and demographic information as well as health information necessary to provide you with the services.
Site and App Use. We may collect Personal Information through your use of PanCAN websites and Apps, including online public forums, discussion boards, or chat rooms. If you become a registered user of PanCAN, we will collect login and profile information and may also collect information about your areas of interest. Please note that any information you post within public forums will become public and may be read, collected, and used by anyone. Please exercise caution when deciding whether to disclose your Personal Information in public forums.
Employment or Volunteer Participation. If you seek employment with or volunteer for PanCAN, we will collect information related to any role you seek. For example, we will collect your employment history information if you submit a resume to PanCAN. If you are volunteering, we may ask about your experience in similar roles, your relationship to pancreatic cancer or other cancers, and/or for any background information needed to fulfill a specific volunteer role. We may conduct background checks about you in connection with your request for employment or to volunteer with PanCAN.
Research Participation. If you inquire about or enroll in a research study, we may collect information, including health information, from you related to the study. Research participant data is separately maintained in a secure, separate and restricted environment.
Event Registration. If you register to participate in a PanCAN event, in addition to your contact information we may also ask about your relationship to pancreatic cancer or other cancers, and your demographic information. This information is useful for planning and operating the event and helps us let you know about special activities for caregivers, survivors, and those living with pancreatic cancer.
Individual as Service Provider. If you collaborate with PanCAN to provide any services to PanCAN or its constituents, we may collect information about you such as your name, employer, title, and contact information. We collect this information for the purposes of performing the collaboration with you and contacting you about it. If it is necessary for purposes of paying you for your services, we may also collect bank account information, address, etc.
Third-Party Fundraising Campaigns, Promotions or Events. We may use or interact with third parties to conduct fundraising campaigns, promotions or events, including online platforms. In these instances, we may receive access to donor reports which includes donor name, contact information and donation amount. We also may receive your Personal Information if you respond to a cause-related marketing campaign or other promotion benefitting PanCAN that is conducted by one of our corporate partners.
Social Media Interfaces. If you elect to connect your social media account to your PanCAN account, certain Personal Information from your social media account will be shared with us, which may include Personal Information that is part of your profile or your friends’ profiles. Your interactions with social media companies and the use of their features are governed by their privacy policies.
Other Sources. We may receive your Personal Information from other sources with which you or PanCAN engage. These may include third-party organizations we collaborate with to provide support services and information to patients and their caregivers; or data sources that supplement or link the information we collect from you.
How may we use your personal information?
Generally, our uses of Personal Information include, without limitation, enabling you to make a donation, processing donations, verifying your identity, managing your preferences, responding to your inquiries about our services or about volunteering with PanCAN, processing grant applications, or providing information, such as sending marketing communications and newsletters. We may use Personal Information for the following purposes:
- Mission Delivery and Support Operations. We will use your Personal Information to respond to your inquiries and to provide you with the information, resources and support services you request. We may use your Personal Information to help us better understand how we can serve you and others, to better communicate with you, for research and educational purposes, and to better serve you and your community with relevant programs, services and information. We may also use your Personal Information to develop, evaluate and improve our programs and services. For instance, we may contact you with a survey seeking voluntary feedback on services you have received.
We may use your Personal Information to keep you informed about pancreatic cancer-related news developments, to notify you of PanCAN services that may be of interest to you, to invite you to upcoming PanCAN events in your area, to request voluntary time or monetary contributions to PanCAN, or to request your participation in a PanCAN research study. For example, if you contact our Patient Services department, your information may be used to connect you to services, education, treatment assistance, and/or clinical trial resources. - Health Data PanCAN collects health data, with patient permission, through various programs and initiatives, with the goal of progressing pancreatic cancer research and improving patient outcomes. PanCAN may use these data for research and educational purposes, in alignment with our mission as described below:
- To inform basic research and discovery hypotheses, experimental design, and/or group discussion on topics related to pancreatic cancer.
- To validate ongoing research studies or results with supporting PanCAN-generated data / information.
- To inform drug development hypotheses, including pre-clinical or clinical study design, compound repositioning, or combination usage with alternative agents.
- To inform patient support programs.
- To educate patients, caregivers, and/or general public on optimal clinical care pathways and patient journey decision-making or augment the ability to navigate treatment options to achieve optimal patient outcomes and quality of life.
- To educate scientific and medical professionals on the sentiment / activity of their own patients, on favorable clinical care pathways and therapeutic options for patients, and/or, inform or validate investigational hypotheses, based on real-world evidence.
- To educate drug developers, diagnostic companies, technology companies, or other commercial organizations to inform future direction of investment in discovery and development of new patient solutions for pancreatic cancer or to inform patient-related programs.
In appropriate circumstances, such as when required by law or in circumstances in which it is a best practice to do so, we will ask for additional consent from you to use your health information. We may use your contact information to ask for you for such consent. You are not required to provide us with additional consent and your refusal to do so will not affect your access to other PanCAN services and offerings.
- Data Analytics. We also perform data analysis and research activities to gain a greater understanding of pancreatic cancer, pancreatic cancer treatment and the related needs of patients and their caregivers and our constituents. This analysis can help us improve patient experiences, mission delivery, and support. We may also perform data analytics to improve our products and services that can better support our mission.
- Targeted Fundraising. We may use certain information (name, address, telephone number or email information, date of birth, gender, dates of service, department of service information, etc.) to verify identity and/or contact you for the purpose of raising money for PanCAN, but you have the right to opt-out of receiving such future communications with each communication. You are free to opt-out of any or all fundraising communications and your decision will have no impact on your ability to receive or access PanCAN services.
- Other Business Purposes. We may use Personal Information for other business purposes, such as conducting audits, fraud monitoring and prevention, recordkeeping, developing new services, research and educational purposes, improving or modifying our programs and our services, identifying usage trends, determining the effectiveness of fundraising campaigns and mission activities, and updating and expanding our business activities.
- Targeted Outreach and Advertising. We may work with third-party service providers to target advertisements and outreach to you based on your preferences or other information, in some cases combining data we collect from you through online cookies and other technologies with other identifiable data and de-identified data (such as a hashed, non-readable email or postal address). In addition, we may use third-party service providers to display content-specific advertisements to you after you have left our sites when you go to other websites. These third-party service providers may use cookies, web beacons or similar technologies to tailor advertisements to interests shown by browsing our sites or by visiting other websites. We do not control the third-party service providers’ tracking technologies or how they may be used. The collection of your information or use of technologies by third-party service providers are subject to those third-parties’ privacy policies, not PanCAN’s.
- With Your Consent. In addition to the other uses described in this section, we may also use your information as you expressly authorize us to do so.
We may also use information and data for various internal purposes, where permissible under applicable laws and regulations, to help deliver products, services, and content that are better tailored to the users of our services, our mission, and for other purposes.
- Internet Protocol (IP) Addresses from All Visitors to its Websites. An IP address is a number that is automatically assigned to your computer when you use the Internet. We use IP addresses to help diagnose problems with our server, administer our websites, analyze trends, track users’ movement on our webpages, gather broad demographic information for aggregate use for us to improve our webpages, and deliver customized, personalized content. IP addresses are not linked to Personal Information.
- Browser and Device Information. Certain information is collected by most browsers or automatically through your device, such as your Media Access Control (MAC) address, computer type (Windows or Mac), screen resolution, operating system name and version, device manufacturer and model, language, Internet browser type and version and the name and version of the services you are using. We use this information to ensure that the services function properly.
- Web Server Traffic Pattern Information and Browsing History. We collect standard web server traffic pattern information and your browsing history. General traffic, website usage, browser information and length of stay information is collected.
- Cookies. We use “cookies,” small files that are sent to your web browser and stored on your computer’s hard drive, to enhance your online experience. The cookies collect information about your use of our services, such as the type of browser you use (such as Google Chrome or Internet Explorer), your home domain or Internet service provider, your referrer URL (which is the URL for the website that you were viewing prior to visiting the website), how you were directed to the services, which specific pages you accessed, how long you view each page, the time and date you access our services and anonymous traffic data. If you do not want information collected by cookies, most browsers allow you to automatically decline cookies or be given the choice of declining or accepting a cookie (or cookies) from a website. If, however, you do not accept cookies, you may experience some inconvenience in your use of our services.
- Pixel Tags and Other Similar Technologies. Pixel tags (also known as web beacons and clear GIFs) may be used to, among other things, track the online actions of users of our services (including email recipients), measure the success of our marketing campaigns and compile statistics about usage of the services and response rates.
- Physical Location. We may collect the physical location of your device by, for example, using satellite, cell phone tower or Wi-Fi signals. We may use your device’s physical location to provide you with personalized location-based services and content. In some instances, you may be permitted to allow or deny such uses and/or sharing of your device’s location, but if you do, we may not be able to provide you with the applicable personalized services and content.
With whom may we share your personal information?
In furtherance of our mission, your Personal Information may be shared with:
- PanCAN Employees, Directors and Agents. We may provide your information with its employees, directors and agents who are conducting activities for PanCAN, when your information is related to the activities that they are conducting.
- PanCAN Collaborators. We may provide your information to organizations and companies that collaborate with PanCAN in carrying out services, products or programs for the benefit of pancreatic cancer patients, their families or the pancreatic cancer research community. This may include pharmaceutical companies, biotechnology companies, data analytics companies, health care companies, and insurance companies any of which may be involved in the development of therapies and other products that may benefit pancreatic cancer patients. Collaborators also may include academic medical centers, content providers, research or education program co-sponsors, and other third parties that wish to advance the goals of research, education, dissemination or information and otherwise assist PanCAN in fulfillment of our mission.
- Third Party Service Providers. We may share Personal Information with third-parties that provide operational services to PanCAN (such as website hosting, information technology and infrastructure, pre-clinical and clinical trial contract research organizations, data analytics, email delivery, credit card processing, order fulfillment, auditing or other services) or that otherwise assist PanCAN in providing you with support and resources.
- Strategic Enhancement. We may collaborate with organizations to provide or improve its services and operations. For example, we may share Personal Information, as applicable, with organizations that are working with PanCAN to provide free or discounted transportation or lodging services to our constituents or with organizations to conduct data analytics projects that allow us to better understand the use of our services.
- Volunteers. We may share limited personal information, such as contact information and your relationship to pancreatic cancer, with volunteers who are assisting PanCAN and who require the information as part of their duties.
- Third Party Charitable Promotions. We may share your contact-related Personal Information, excluding health information, with companies that are conducting charitable sales promotions to benefit PanCAN. You are under no obligation to respond to those promotions. You may at any time request that your information not be shared with any such company conducting charitable sales promotions on PanCAN’s behalf. Personal information collected through a text or SMS program, will not be shared, sold, or rented to other nonprofit organizations for their own marketing purposes.
- Social Media. If you engage with PanCAN on a public, social media platform, you may be sharing your Personal Information with your friends associated with your social media account, with other website users and with your social media account provider. By connecting your PanCAN account with your social media account, you authorize us to share information with your social media account provider. For example, if you log-in to our website using your social media account, use a “like” button or use other social media features while visiting our website, social media companies may collect information about you. You understand that your interactions with social media companies, the use of their features, and the use of the information we share will be governed by their privacy policies. Please note that any information you post within these public forums or social media pages may become public and may be read, collected, and used by anyone. Please exercise caution when deciding whether to disclose your Personal Information in these forums.
- Memorial and Honor Giving. You may choose to honor someone whose life has been impacted by cancer when you make a donation in their name. Once your gift is received and you have requested a notification be sent to the honoree or family, PanCAN will send a card to the honoree or family acknowledging your gift. The amount of money donated through memorial or honor donations is kept confidential, but the individual (or their immediate family in the case of a memorial donation) may be provided with the name and address of those individuals who have donated in honor of their loved one, whether in the card itself or at the request of the honoree or family.
- Partners for PanCAN-Related Activities. PanCAN has some unique opportunities for its partners to share products or services with you that may benefit PanCAN and its mission. PanCAN may make your Personal Information available to these third parties to further these purposes.
- Other Uses or Disclosures of Personal Information. We may also use and disclose your Personal Information as we believe to be necessary or appropriate: (a) to comply with applicable law, which may include laws outside your country of residence, to respond to requests from public and government authorities, which may include authorities outside your country of residence, to cooperate with law enforcement, or for other legal reasons; (b) to enforce our Terms of Use; and (c) to protect our rights, privacy, safety or property, and/or that of our affiliates, you or others. In addition, PanCAN may use, disclose or transfer your information to a third-party in the event of any reorganization, merger, sale, joint venture, assignment, transfer or other disposition of all or any portion of our organization (including in connection with any bankruptcy or similar proceedings).
What are your privacy options and access?
Contact Preferences and Restrictions. We respect your privacy and recognize that you may wish to limit the ways in which we contact you and/or share your Personal Information, including for fundraising purposes. On many of our email communications, you may manage what type of communications you want to receive from PanCAN, or you may opt-out from receiving certain email communications. However, we will continue to send transaction-related emails regarding our relationship and the services you have requested.
In addition, PanCAN offers the following options:
- Do not contact me by postal mail.
- Do not contact me by telephone.
- Do not contact me by SMS (text) message.
- Do not contact me by email.
- Do not share my information
To inform us of any desired restrictions, please make changes through the instructions on the PanCAN email communication, email us at info@pancan.org, or mail your request to: Pancreatic Cancer Action Network, 2101 Rosecrans Ave, Suite 3200, El Segundo, CA 90245, Attn: Customer Service.
Registrations and Subscriptions. If you register for a PanCAN event or sign up for a newsletter or similar subscription, you will receive communications related to that service, regardless of your prior preferences or restrictions. If you no longer wish to receive event emails or other email subscriptions, email us at info@pancan.org , or mail your request to: Pancreatic Cancer Action Network, 2101 Rosecrans Ave, Suite 3200, El Segundo, CA 90245, Attn: Customer Service.
Mobile Applications (Apps). You can stop collection of information by Apps by uninstalling the Apps. You may use the standard uninstall processes available as part of your mobile device or network. To discontinue the collection of geolocation data within Apps, you can modify your privacy settings on your mobile device.
Personal Information Changes. If you have a PanCAN account, you may login to update or change your Personal Information. You can also send your request through one of the contact options on our Contact Us page. After submitting a request, PanCAN will utilize identity verification methods in order to change or delete account information and/or data.
What are our data security protections?
PanCAN is committed to using reasonable organizational, technical and administrative measures designed to secure the information to protect Personal Information within our organization. Our website’s donation, registration, form request, and ecommerce systems use Secure Sockets Layer (SSL) encryption to protect sensitive data transmissions from your computer to our website. In certain areas, password protection is used to protect your privacy and security. Personal Information provided to PanCAN is treated with care and discretion. PanCAN will take a proactive approach to ensure the information is kept private and not misused.
Transmission Errors or Unauthorized Acts. Unfortunately, however, no data transmission over the Internet, nor any data storage system, is 100% secure. As a result, while we strive to protect your personal information, PanCAN cannot ensure or warrant the security of any information you transmit to us or any information provided online, and you do so at your own risk. PanCAN will not be liable for disclosures of your personal information due to errors in transmission or unauthorized acts of third parties. However, once we receive your transmission, we do our best to ensure its security on our systems by making reasonable efforts to protect the information.
PanCAN retains Personal Information that we receive for as long as necessary to fulfill the purpose(s) for which the information was collected, to provide our services and products, to pursue legitimate business purposes, to enforce our agreements, and comply with all applicable laws.
Notices and Disclosures
Children’s Privacy. With the signed consent of a parent or guardian, children under the age of 13 are able to participate in select PanCAN services, such as volunteering for various PanCAN initiatives, PurpleStride, Wage Hope My Way, and Advocacy Day, and personal information may be collected from such participating children. Other PanCAN services are not intended for children under the age of 13, and PanCAN does not knowingly collect any information from anyone under 13 years of age in the absence of the consent provided by a parent or guardian. If you become aware of any Personal Information we have collected from a minor and wish to have it deleted, please email us at: info@pancan.org or mail your request to: PanCAN, 2101 Rosecrans Ave, Suite 3200, El Segundo, CA 90245, Attn: Office of Legal Affairs.
Links to Third-Party Websites. Our services may contain links to third-party websites, whose privacy practices may be different from PanCAN’s. This Privacy Statement does not address, and we are not responsible for, the privacy, information or other practices of any third parties, including any third-party operating any website or service to which the Services link. Links to other sites do not imply PanCAN’s endorsement of the products or services or privacy or security practices of those websites. In addition, we are not responsible for the information collection, use, disclosure or security policies or practices of other organizations, such as Facebook, Apple, Google, Microsoft, RIM or any other app developer, app provider, social media platform provider, operating system provider, wireless service provider or device manufacturer, including with respect to any Personal Information you disclose to other organizations through or in connection with our sites or our social media pages.
Data Subject to U.S. Laws/Governing Law and Jurisdiction. PanCAN services are controlled and operated by us from the United States and are not intended to subject us to the laws or jurisdiction of any state, country, or territory other than that of the United States. Your Personal Information may be stored and processed in the United States where our servers are located and our central database is operated. In certain circumstances, courts, law enforcement agencies, regulatory agencies or security authorities may be entitled to access your Personal Information. Unless a law precludes it, any dispute regarding your Personal Information, your use of our services, the information we collect about you when you use our services, or any disclosures of information related to you, shall be decided under the substantive laws of the State of California, and any litigation you may file against PanCAN or its directors or employees must be brought only in a state or federal court located in Los Angeles County, California.
Monitoring, Enforcement and Legal Requests. PanCAN has no obligation to monitor the website or the use of the website, or to retain the content of any user session. However, PanCAN reserves the right to monitor, review, retain, and/or disclose any information as necessary to satisfy any applicable law, regulation, legal process, or governmental request or to cooperate with law enforcement and other authorities in investigating the claim of illegal activity. We may use IP addresses to identify a user when we feel it is necessary to protect our service, website, clients, potential clients, or others.
Information on Third Parties. If you disclose to us any Personal Information relating to other people, you represent that you have the authority to do so and to permit us to use the information in accordance with this Privacy Statement.
How to contact us about this Privacy Policy?
To let us know how you would like us to contact you, or to opt-out of receiving phone calls, emails, texts, or mail, or to stop sharing or selling your information, email your request to us with identifiable contact information so that we are able to respond to your request. If you have questions about our Privacy Policy, want to know what Personal Information of yours PanCAN is in possession of, or if you have a concerns regarding our privacy practices, you can email us at info@pancan.org, mail your request to: Pancreatic Cancer Action Network, 2101 Rosecrans Ave, Suite 3200, El Segundo, CA 90245, Attn: Office of Legal Affairs, or use the contact options on our Contact Us page. Please provide a description of your comments or questions in enough detail so we can respond appropriately and contact you.
Updates to this Privacy Policy.
Since we will continue to implement new technologies and improve our services and features, this Privacy Policy is subject to change at any time, without notice. Changes will be posted here or in other formats that we deem acceptable and all changes will be effective immediately upon posting. When changes are made, we will update the date at the top of our Privacy Policy. Your continued use of PanCAN’s websites or other PanCAN services after the effective date of any modification to the Privacy Policy will be deemed to be your agreement to the changed terms.