Archived Privacy Statement

The Cystic Fibrosis Foundation (CFF) is committed to protecting your privacy. This Privacy Statement explains the types of personal information we may collect from website visitors and other individuals with whom we interact, whether online or offline, why we collect it, and with whom we may share it. It also describes how we protect your personal information and how you can contact us with any questions.

21 min read

This version of CFF's Privacy Statement has been superseded; you can find the current version here.

Our Mission

CF Foundation is a nonprofit organization whose mission is to cure cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the CF community, and advancing high-quality, specialized care.

The information we collect helps us to deliver patient-centered programs and continue our work to improve the quality of life for those with CF. We value the input of our community and are committed to ensuring that we are utilizing this personal information as stated in this Privacy Statement, in furtherance of our mission.


This Privacy Statement applies to websites and other online services that include an authorized link to it (each, a “Site”). It also applies to services we provide and interactions we have offline. It does not apply to information that is collected in connection with the following services:

  • The CF Foundation Patient Registry. For more than 50 years, the CF Foundation has been collecting and analyzing information that people with CF choose to submit to the CF Foundation Patient Registry. Registry data is used to produce reports on the health outcomes of people with CF receiving care at CF Foundation-accredited care centers, help inform clinical care through tools like CFSmartReports, create CF clinical care guidelines, guide quality improvement initiatives, and help researchers study CF treatments and outcomes and design CF clinical trials. People with CF execute various forms (such as Informed Consents and HIPAA authorizations) to submit their data into the Registry, and the use and disclosure of their Registry information is governed by those forms and laws regarding clinical research.
  • Employment-related information. Information we receive regarding potential employment opportunities and actual employees is not covered by this Privacy Statement, even if you submit it electronically or through (“the Site”).
  • Services we provide to clinicians. The CF Foundation provides certain services to CF clinicians and care centers intended to help them improve clinical care. Any protected health information we receive or process in providing these services to care centers is not covered by this Privacy Statement, but may be governed by the Health Insurance Portability and Accountability Act (HIPAA). If you want to learn more about HIPAA, visit the Office for Civil Rights website.

This Privacy Statement also does not apply to any websites or other online services that link to a different privacy policy.

Information We Collect

Information You Provide

You are welcome to make use of the educational content on the Site without providing certain personal information. However, we collect any personal information you choose to provide us. For example, if you choose to register to make donations, get involved as a volunteer, attend events, request information, apply for a grant, or similar activities, you will need to provide certain personal information such as name, address, telephone number, email address, health information or other descriptive information.

We also collect financial account information you provide us, such as credit card number or banking information. For example, if you choose to use a credit card, write a check, or use another type of payment account to make donations or pay to attend events, you will need to submit your credit card or other payment data to us.

Information You Share Through the Site

Our Site may create opportunities for you to share information with others through message boards, blogs, apps, etc. Please remember any information you disclose in these areas becomes public information. Therefore, please exercise discretion in deciding what information to post or share.

Information About Your Use of the Site

We may collect information about how you use the Site. For example, we may collect device information, such as your IP address, other unique device identifiers, operating system version, browser type and settings, and settings of the device you use to access the Services. We also may collect usage information, such as the time and duration of your use of the Site and other information about your interaction with content offered through the Site, and any information stored using cookies, and similar technologies that we have set on your device.

Information From Third Parties

We may receive information about you from publicly and commercially available sources, as permitted by law, which we may combine with other information we receive from or about you. For example, we may receive information about you from a social media site if you connect to the Services through that site.

We may combine this information with other personal information we have collected.

We may aggregate or de-identify the information described above so that it does not identify you. Aggregated or de-identified data is not subject to this Privacy Statement.

How We Use Personal Information

The following services are among those the CF Foundation is currently providing or may provide to website visitors, members of the public, patients and families who contact us, donors, those who attend our events, grant applicants and awardees, those who register at the Site, and others. We may use personal information to provide and manage our services, including to:

  • provide public information about CF, including educational resources about CF
  • send you donation solicitations or follow-up communications related to CF or CF-related developments, events, or updates
  • engage in fundraising through avenues including website, email, mail, and other solicitations
  • enable individuals to sign up for events, like Great Strides and other events, including other fundraising events
  • communicate with you regarding conferences or other CF Foundation events that may be of interest to you
  • provide people with CF and their families with insurance, financial, legal, and other resources
  • help connect the CF community through CF Foundation platforms that foster communications between people with CF, families, caregivers and/or researchers who want to interact with others via blogs, forums, mentoring, or events
  • help people with CF find clinical trials
  • help people with CF and their caregivers find accredited care centers
  • conduct surveys of visitors to CF Foundation website and potential users of CF Foundation services
  • process donations to the CF Foundation
  • communicate with volunteers
  • engage people with CF to inform research being conducted in the CF community via focus groups, surveys, or other means
  • improve our operation and services, including develop new services, features, and functionality, and analyzing the usage trends and preferences of our users
  • provide effective marketing and advertising, including to facilitate the delivery of targeted ads, promotions, and offers both on and off our services (Please see the “Tracking and Cookies” section below for further information about our and third parties' use of cookies, web beacons, and other tracking technologies, as well as information about how to disable cookies and make other choices related to targeted advertising)
  • 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
  • improve, measure, or expand our services and for administrative and operational functions.

We may otherwise use your information with your consent or at your direction.

Special Provisions Related to Fundraising

In addition to what is described elsewhere in this Privacy Statement, the CF Foundation has some provisions applicable to personal information connected to fundraising operations. These are:

  • CF Foundation may collect donors' personal information such as names, company names, titles, addresses, phone numbers, email addresses, payment information (like credit card data), health information, etc. through online or offline communications.
  • CF Foundation uses personal information about donors to respond to inquiries, process donations, issue receipts, help decide who will receive future solicitations (including matching gift requests), organize fundraising events, assess the effectiveness of CFF fundraising or services, inform donors of new activities and services, and similar activities.
  • It is our policy to honor any no-solicitation request as quickly as possible. We are legally required to internally retain records related to donations made, so we cannot delete your name upon request. Instead, we flag records internally so that we can honor no-solicitation requests by suppressing mailings.
  • CF Foundation does not knowingly contact or solicit donations from individuals under 18 years of age. However, outside sources occasionally give us personal information regarding potential donors without including age information. If you believe that we have contacted or solicited donations from a minor, please contact us at so that we can remove the individual from our mailing lists.

Some of the fundraising sections of our Site make it convenient for you to solicit donations for the CF Foundation from your own friends and contacts. If you choose, you can provide name and contact information for your contacts you want to email to ask for donations. The CF Foundation (or the CF Foundation's vendor) will retain your friends' contact information for your convenience for your own future fundraising efforts, but the CF Foundation will not contact or seek donations from your contacts unless they become donors themselves.

Personal Information We May Share

We may share the personal information we collect with our affiliates and partners. We also may share personal information with service providers who assist us in activities such as technology or communications management or to otherwise provide a service to us.

Sometimes the CF Foundation may wish to share the stories of those within our community publicly in order to help others. Before we share your personal information or likeness, however, for this purpose or any other purpose not described in this Privacy Statement, we will obtain your consent.

We might share personal information if we were to sell, assign, license, or transfer all or a portion of our organization or its assets, in which case we would make commercially reasonable efforts to contractually require the recipient to treat the information in accordance with this Privacy Statement. We might also disclose information about you (i) if required by law, subpoena, court order, or legal process, (ii) to law enforcement or other government authorities, or (iii) if we believe disclosure is necessary or appropriate to prevent serious physical harm or in connection with an investigation of or action involving illegal or fraudulent activity or conduct that violates our Terms of Agreement.

We may share your personal information as required by applicable law, in response to legal process, or if we believe it necessary or appropriate to protect, enforce, or defend the legal rights, privacy, safety, or property of the Site, our employees or agents, or other users.

Tracking and Cookies

Like other websites, we and third parties collect information about visitors to our Site using cookies, web beacons, and similar tracking technologies to facilitate administration and navigation on the Site, to better understand and improve the Site, and to provide you with a customized online experience. This may include information about your browser type, geographic location, IP address, and pages you visit. We and our third party service providers may use web beacons in email or other communications with you to assure proper operations of the Site or analyze our effectiveness, such as determining if a message to you was delivered or opened. We may also use cookies, web beacons, and/or third-party web analytic tools to analyze website traffic.

Cookies are small text files or data placed by your web browser on your computer to store information that allow a website to recognize whether a certain computer or device has been used to visit the Site in the past. Cookies enable websites to keep track of online patterns and preferences and make the personalization of web experiences possible. We may make use of session-based and/or “persistent or memory based” cookies, which remain on your computer until you delete them.

Most browsers are initially set up to accept cookies. Your browser or device may offer settings that allow you to choose whether browser cookies are set and to delete them. For example, you may be able to configure your browser not to accept cookies or to notify you when a cookie is being sent. For more information about whether these settings are available, what they do, and how they work, visit your browser help material. Please be aware that some features of the Site may not function properly or may be slower if you disable cookies.

We, along with third parties, also may use other tracking technologies. For example, we may use technologies called beacons (or “pixels”) that communicate information from your device to a server. Beacons can be embedded in online content, videos, and emails, and can allow a server to read certain types of information from your device, know when you have viewed particular content or a particular email message, determine the time and date on which you viewed the web beacon, and the IP address of your device. We and third parties use web beacons for a variety of purposes, including to analyze the use of our Services and (in conjunction with cookies).

Some of these third parties participate in industry-developed programs designed to provide consumers choices about whether to receive targeted advertising. Please visit the websites operated by the Network Advertising Initiative and Digital Advertising Alliance to learn more.

We may aggregate this data to better understand how visitors use our Site, and to help manage, maintain, and report on use of our website.

By visiting our Site, you consented to our use of cookies and other tracking technologies, as described in this Privacy Statement.

Some web browsers have a “Do Not Track” feature that lets a user have the browser notify websites that the user does not want to have his or her online activities tracked. The CF Foundation's website currently does not respond to such browser-initiated signals. Regarding any potential external tracking, please consult external website policies regarding their tracking practices and their responses to Do Not Track signals.

Social Plug-In Data

The Site may use interfaces with social media websites like Facebook, Google+, LinkedIn, Twitter, or others. If you use these to access interfaces to login or to share information about your experience on the Sites with others, we may collect information from these third-party services. In addition, the interfaces may allow the social media website to connect your visit of the Site to your personally identifiable information.

Links to Other Sites

We may provide links to other websites for your convenience and information, but we do not operate these websites and are not responsible for their privacy practices or content. Please review those websites' privacy policies and contact the operators of those websites directly if you have any questions about their practices.

International Data Transfers

This website is intended to only be used in the United States and, accordingly, we may transfer your personal information to our offices in the U.S.; but may also transfer it to service providers in various other countries. The laws, regulations, and standards in these jurisdictions may not be equivalent to the laws in your country of residence. By using our services, including the Site, or by providing us your personal information, you consent to the international transfer of the information.


This Site is intended for use by adults. If you are between the ages of 13 and 18 years old, you may use this Site only if: (i) your use has been approved by your parent or legal guardian, (ii) you use the Site under the supervision of your parent or legal guardian, and (iii) your parent or legal guardian has agreed to our Terms of Agreement (and any additional registration agreements, if applicable) on your behalf.

If you are the parent or legal guardian of a minor, you may use the Site and agree to the Terms of Agreement on behalf of the minor. By doing so, you warrant that you have the legal capacity to act on the minor's behalf and you agree that the provisions of the Terms of Agreement (and any additional registration agreements, if applicable) that are applicable to you are equally applicable to the minor.

Under no circumstances may a minor under the age of 13 use the Site.

California Privacy Rights

California residents are entitled once a year, free of charge, to request and obtain certain information regarding our disclosure, if any, of certain categories of personal information to third parties for their direct marketing purposes in the preceding calendar year. We do not share personal information with third parties for their own direct marketing purposes.

California residents who are registered users of the Site and are under the age of 18 are entitled, in accordance with California law, to request and obtain removal of content and information that they themselves post on the Site. You may request such removal by emailing us at In your request, please provide a description of the material that you want removed and information reasonably sufficient to permit us to locate the material, and include your name, email address and/or user name, year of birth, mailing address (including city, state, and zip code), and the subject line “California Removal Request” so that we can process your request. Please note that your request does not ensure complete or comprehensive removal of the material. For example, materials that you have posted may be republished or reposted by another user or third party.

Protecting Personal Information

We are committed to maintaining the security of personal information. Although it is not possible to guarantee that security measures employed will be fully sufficient to protect personal information, we use appropriate administrative, technical, and physical security measures intended to protect against loss, misuse, improper access, disclosure, alteration, or destruction of personal information, and we review our data security arrangements regularly. These measures include, but are not limited to, encryption of sensitive information both in-transit and at-rest, the obfuscation of sensitive information such as passwords, and the tokenization of credit card numbers. Additionally, sensitive information is protected at-rest by maintaining this information in a secure environment protected by firewalls and intrusion detection/prevention systems and restricting access to this information to those specific CFF personnel who have a need to know. If we share personal information with third parties to provide services to us, we contractually require them to employ appropriate security measures to protect it.

If you register with the CF Foundation for any services that require a username and password, we encourage you to take strong precautions to protect those credentials. While we strive to protect your personal information, we cannot ensure or warrant the security of any information you transmit to us or receive from us. This is especially true for information you transmit to us via email.

Your Choices

If you would like to access or change information you have submitted to us, you may be able to update it through the registration process. If you are unable to do so, please email us at or write to us at Cystic Fibrosis Foundation, 4550 Montgomery Avenue, Suite 1100 N, Bethesda, MD 20814, ATTN: Privacy Officer.

If you would like to request the deletion of personal information you have previously submitted to the CF Foundation, please email us at or write to us at Cystic Fibrosis Foundation, 4550 Montgomery Avenue, Suite 1100 N, Bethesda, MD 20814, ATTN: Privacy Officer. Subject to applicable law and best practices, we will make commercially reasonable efforts to delete or suppress your personal information. Please be advised that we are required by law to retain certain records, such as donation and other records, for a period of time.

If you do not wish to receive further emails, postal mail, or other communications from CFF, you may use our email opt-out form, use the unsubscribe mechanism described in the communication you received, call us at 800-344-4823, email us at, or write to us at Cystic Fibrosis Foundation, 4550 Montgomery Avenue, Suite 1100 N, Bethesda, MD 20814, ATTN: Communications.

It is our policy to honor any no-solicitation request as quickly as possible. We are legally required to internally retain records related to donations made for a period of time, so we cannot delete your name upon request. Instead, we flag records internally so we can honor no-solicitation requests by suppressing messages as requested.

We encourage donors who wish to reduce the amount of unwanted mail and/or have their names removed from other mailing lists to contact the Direct Marketing Association (DMA) to enroll in the DMA's program to help control the mailings they will receive.

Changes to This Notice

We may update this Privacy Statement at any time and, if so, we will post the new effective date below. If these changes would permit us to share your information more broadly than described above or use your information in a manner that is not described above, we would post an announcement on this Site and/or ask for your consent.

Your continued use of the Site after the effective date of the new Privacy Statement constitutes your consent to the new Privacy Statement.

Contact Us

We welcome your comments. If you have any questions or comments about our Privacy Statement or our information practices, please contact the Privacy Officer, Kathryn Fox, at or, or you may write to us at Cystic Fibrosis Foundation, 4550 Montgomery Avenue, Suite 1100 N, Bethesda, MD 20814, ATTN: Privacy Officer.

Share this article
About the CF Foundation
Have questions? We’re here to help. Call us at 1-800-FIGHT CF

Mon - Thu, 9 am - 7 pm ET
Fri, 9 am - 3 pm ET


More Ways To Get Help