Privacy Policy

Privacy Policy and Legal Disclaimers

The information and advice contained in or made available on or through the Pulmonary Fibrosis Foundation (PFF) website is for informational and/or educational purposes only. It is not intended to be a substitute for professional medical advice. Always consult your personal physician or healthcare provider with any questions you may have regarding your specific medical condition.

Disclaimer of Warranty

Preserving donor privacy is a key concern of the Pulmonary Fibrosis Foundation (PFF). The PFF adheres to the Donor Bill of Rights developed by the Association of Fundraising Professionals (AFP), the Association for Healthcare Philanthropy (AHP), the Council for Advancement and Support of Education (CASE), and The Giving Institute.

The PFF neither sells nor shares donors' personal information with other organizations, nor does it send donor mailings on behalf of other organizations. If a donor indicates that he or she would no longer like to receive postal mail or e-mail from the PFF, the request will be honored immediately.

The PFF never divulges the amount given when issuing letters of notification that a gift has been made in memory or honor of an individual.

The PFF always honors donors’ requests to remain anonymous. Procedures are in place to ensure that the identities of these individuals remain confidential. 

This policy applies to all donors, regardless of whether they provided their information to the PFF online, over the phone, via mail, or under any other circumstances.

Opt-Out Policy

You may request not to be contacted by the PFF in connection with any new services, updates, programs or promotions. Requests not to be contacted by the PFF should be sent in writing to the Pulmonary Fibrosis Foundation, 230 East Ohio Street, Suite 500, Chicago, IL 60611 or via e-mail to info@pulmonaryfibrosis.org. You may also make your request by calling 888.733.6741.

Data Security

We use commercially reasonable efforts to prevent unauthorized access, maintain data accuracy, and ensure the correct use of information.  We have put in place commercially reasonable physical, electronic, and managerial procedures to safeguard and secure the information we collect online.  All media containing credit card information is stored at third-party datacenters with physical access controls in place that meet PCI (payment card industry) standards, and is subject to those third-party policies regarding data privacy and security.

The Foundation does not employ SSL encryption software on our website because we do not collect any personal information directly on our website. If personal information is required to be collected, the user is directed to a third party partner whose site is appropriately encrypted.

Access to our network and servers is limited to Foundation staff; user identification and passwords are strictly controlled, and passwords are required to be changed on a regular schedule. Access to third party database and processing centers is also limited to the appropriate Foundation staff and user identification and passwords are strictly controlled.  Our servers, workstations and online backups are monitored 24/7 by our independent IT consultants and these consultants also monitor our antivirus software and ensure that it is always up to date.  This limited user access and constant system monitoring ensure that information stored on our physical premises is strongly protected.

Below are links to the privacy policies of the third party partners that we use for communicating with our donors or processing our donor records:

Limitation of Liability

Neither the PFF, its affiliates and agents, nor the officers, employees, and directors of each of them, will be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from your use of this website, including, without limitation, any liability for damage to your computer hardware, software, or data, or business. Except as prohibited by law, the PFF shall have no liability for any loss or injury caused, in whole or in part, by its actions, omissions, or negligence in procuring, compiling, or delivering the Information, or any errors, omissions, or inaccuracies in the Information, regardless of how caused. In addition, the PFF shall have no liability for any decision made, or action taken or not taken, in reliance upon the Information.

Your Privacy and Security

Collection and Use of Your Information: PFF collects  only such personal information as may be provided by you.  This traditionally includes your name, address, telephone number, and email address, which we may request when you register for PFF programs, activities, webinars, and other activities. PFF may also request health information, such as when PFF asks whether you are a PF patient, family member or caregiver. At your option, you may also provide additional information, including date of birth, and specific interests. PFF’s policy concerning donor information is stated above under the heading  “Donor Privacy Policy.”

PFF may use the personal information it collects for the following activities and services:

• send you donation solicitations or follow-up communications related to PF or PF-related developments, events, or updates
• engage in fundraising through avenues including website, email, mail, and other solicitations
• enable individuals to sign up for events such as the PFF Walk, Broadway Belts for PFF!, and other fundraising events
• communicate with you regarding conferences or other PFF events that may be of interest to you, such as the PFF Summit
• help connect the PF community through PFF platforms that foster communications between people with PF, families, caregivers and/or researchers who want to interact with others via blogs, forums, mentoring, or events
• help people with PF find clinical trials
• help people with PF and their caregivers connect with the PFF Care Centers
• conduct surveys of visitors to the PFF website and potential users of PFF services
• process donations to PFF
• communicate with volunteers
• engage people with PF to inform research being conducted in the PF community via focus groups, surveys, or other means
• improve PFF’s operation and services
• protect our rights and the rights of others, including to detect and prevent fraud, protect, enforce, or defend the legal rights, privacy, safety, or property of our services, our employees or agents, or other users and to comply with applicable law
• other uses as may be consented to by you

The PFF will not sell information the PFF collects about you, or that you provide to the PFF, to any third party, although the PFF may disclose such information to its employees, officers, directors, agents, and representatives, and with third party vendors who provide services on the PFF's behalf such as processing payments or orders. In addition, the PFF may disclose such information where required by law or legal process. By interacting with this Site, the User acknowledges that he or she has read this privacy policy, understands it, agrees to its terms. To review or change the information you have voluntarily supplied the PFF, please send an email to info@pulmonaryfibrosis.org.

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