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 visitors, including donors, to this website, 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.

This Privacy Statement applies to personal information we collect from website visitors, as well as personal information we may gather outside this site, such as through mobile applications, social media and written correspondence with CFF.

Our Mission

CFF is a nonprofit organization whose mission is to cure cystic fibrosis (CF) and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high-quality, specialized care.

Our focus is funding and supporting the development of new drugs to fight the disease, improving the quality of life for those with CF, and ultimately finding a cure.

What We Do That May Involve Personal Information

What’s in the Scope of this Privacy Statement:

The following services are among those CFF 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, those who register at (“the Site”), and other individuals.

We may:

  • provide public information about CF, including educational resources about CF

  • collect personal information, including name, address, and credit card number, for those who make online donations to CFF

  • process donation information and provide receipts

  • enable website visitors to sign up for events, like our Great Strides run/walk-a-thon and other fundraising events

  • help connect CF patients and families who want to communicate with other CF patients and families via blogs or forums where individuals can learn and post their own content

  • provide patient assistance programs to help patients who cannot afford their CF medication

  • provide legal assistance related to CF payment issue

  • conduct surveys of visitors to CFF and users of CFF services

  • help patients find clinical trials

  • help patients find accredited care centers

  • communicate with volunteers

Any additional online services involving personal information that we may provide will be described on the Site.

What’s Not in the Scope of this Privacy Statement:

  • The CFF Patient Registry. For nearly 50 years, CFF has been collecting and analyzing information that CF patients choose to submit to the CFF Patient Registry. Registry data is used to produce reports on the health outcomes of CF patients receiving care at CFF-accredited care centers, create CF care guidelines, assist care teams, guide quality improvement initiatives, and help researchers study CF treatments and outcomes and design CF clinical trials. Patients 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 provided regarding potential employment opportunities is not covered by this Privacy Statement, even if you submit it electronically or through the Site.

  • Services we provide to clinicians. CFF provides certain services to CF clinicians and care centers intended to help them improve clinical care. Any health information we receive or process in providing these services to care centers is subject not to this Privacy Statement but to a federal medical privacy law called HIPAA (Health Insurance Portability and Accountability Act).

Information You Provide to CFF and Your Choices

Personal Information

You are welcome to make use of the educational content on the Site without providing any personal information. However, you may choose to provide us with personal information via the Site. For example, if you choose to register for a CFF account in order 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, or other information.

If you choose to use a credit card or PayPal account to make donations or pay to attend events, you will need to submit your credit card or PayPal data through the Site. (If you prefer, you can send a check instead of donating online.)

If you submit your personal information to register, make a donation, volunteer, send us questions and/or let us know that you would like updates about CF or CFF, we may later send you donation solicitations or follow-up communications related to CF or CF-related developments, events, or updates. If you wish to stop these communications, please see the section below titled “How to Unsubscribe from CFF Communications.”

Some of the fundraising sections of our Site make it convenient for you to solicit donations to CFF 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. CFF (or CFF’s vendor) will retain your friends’ contact information for your convenience for your own future fundraising efforts, but CFF will not seek contact or donations from your contacts unless they actually become donors themselves.

We use personal information collected through the Site only for purposes consistent with this Privacy Statement. If we wish to use or disclose your personal information for an additional or inconsistent purpose (like, for example, publicizing your story), we would obtain your consent before doing so.

We may aggregate and/or anonymize personal information provided by our visitors and users to improve, measure, or expand our services.

Nonpersonal Information We Collect

Like other websites, we collect non-personal web usage information about visitors to our site. This may include information about your browser type, geographic location, IP address, and pages you visit. We 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 hard drive 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’s hard drive until you delete them. You can adjust your browser settings to remove or block cookies, although if you do so, it may not be possible to utilize all of our services if you reject cookies. If you visit our site, you have consented to our use of cookies, as described in this Privacy Statement.

A web beacon is a graphic on a web page or in an email that gathers non-personal web log information about pages visited or emails opened. We use web analytics services, such as Google Analytics, to record non-personal data such as browser type, operating system, the date and time of a visit, where visitors came from, the pages visited on this website, the time spent viewing site, where visitors went when they left the site, and return visits to the site. Please see here to learn more about how Google Analytics collects and processes data and to learn how to opt out of cookies set by Google Analytics.

We may aggregate this non-personally identifiable data to better understand how visitors use our site, and to help manage, maintain, and report on use of our website.

We may store IP addresses for fraud detection and prevention purposes.

California “Do Not Track” Disclosure

California recently enacted a law requiring websites to explain certain online practices regarding tracking of visitors.

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. CFF’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 sites like Facebook, Google+, LinkedIn, Twitter, or others. If you chose to “like” or share information from the CFF Site through these services, you should review their privacy policies. If you are a member of a social media site, the interfaces may allow the social media site to connect your Site visit to your personally identifiable information.

Personal Information We May Share

If you provide personal information to us via the Site, we may share it with service providers who assist us in activities such as technology or communications management. These providers are not authorized to use or disclose the formation except as necessary to perform services on our behalf or to comply with legal requirements. We will not share personal information you provide through the Site with third parties for marketing or fundraising purposes.

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 legal action involving illegal or fraudulent activity or conduct that violates our Terms of Agreement.

Special Provisions for Information Related to Direct Mail Solicitations

In addition to the provisions that are described elsewhere in this Privacy Statement, CFF has some unique provisions that only apply to personal information connected to a CFF direct mail solicitation. These are:

  • CFF does not knowingly contact or solicit donations from individuals under 18 years of age. However, that may be occasionally unavoidable if an outside source has not collected or appended age information to its lists.

  • CFF may collect personal information such as names, company names, titles, addresses, phone numbers, email addresses, and payment information (like credit card information) from donors via return mail or during telephone calls.

  • CFF may append or update contact information about donors or prospective donors from public records like U.S. Postal Change of Address information or local or state government records. CFF may also append information to its direct mail files about donors’ volunteer activities for CFF, such as participation in local CFF chapter fundraising events.

  • CFF uses personal information about donors to respond to inquiries, process donations, issue receipts, help decide who will receive future solicitations, organize fundraising events, assess the effectiveness of CFF fundraising or services, and inform donors of new activities and services.

  • From time to time, CFF shares the names and addresses of its direct mail donors with other charitable organizations. (This only applies to donors who make contributions in response to direct mail solicitations — not donors who contribute online.) However, CFF does not share donors’ telephone numbers, email addresses, or any donation or financial information about donors. The sharing of names and addresses allows CFF to introduce thousands of new volunteers and donors to CFF and provides significant funds to help support our vital research and care programs.

  • If you do not want us to share your name and address with other charitable organizations, or if you do not want to receive other mailings from CFF, please call us at 866-347-2345 or 800-344-4823, email us at, or write to us at Cystic Fibrosis Foundation, 6931 Arlington Road, Bethesda, MD 20814, ATTN: Direct Marketing.

  • 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 to suppress mailings so no-solicitation requests will be honored.

  • We encourage donors who wish to have their names removed from CFF’s and 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.

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. If we share personal information with third parties to provide services to us, we will contractually require them to employ appropriate security measures to protect it.

If you register with CFF, we encourage you to take strong precautions to protect your username and password. 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. We review our data security arrangements from time to time as we deem appropriate.

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 contact those websites directly if you have any questions about their practices.


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 his or her supervision, and (iii) he or she has agreed to the Terms (and any additional registration agreements, if applicable) on your behalf.

If you are the parent of a minor, you may use the Site and agree to the Terms 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 (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.

International Data Transfers

We may transfer your personal information to our offices or service providers in various countries, including to jurisdictions not deemed “adequate” by European Union governmental bodies. If you submit your personal information to the Site, you are consenting to the international transfer of the information.

Changing and Accessing your Information

If you would like to access or change information you have submitted to us online, 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, 6931 Arlington Road, Bethesda, MD 20814, ATTN: Compliance.

If you would like to request the deletion of personal information you have previously submitted to CFF, please email us at or write to us at Cystic Fibrosis Foundation, 6931 Arlington Road, Bethesda, MD 20814, ATTN: Compliance. 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.

How to Unsubscribe from CFF Communications

If you do not wish to receive further emails, postal mail, or other communications from CFF, please 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, 6931 Arlington Road, Bethesda, MD 20814, ATTN: Compliance.

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 to suppress mailings so no-solicitation requests will be honored.

We encourage donors who wish to have their names removed from CFF’s and 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. We expect that most changes will only be editorial in nature or reflect changes in the services we provide. However, in the unlikely event that we would ever make material changes that would permit us to share your information more broadly than we have previously described, we would post a prominent 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 would constitute your consent to the new Privacy Statement.

Contact Us

Cystic Fibrosis Foundation welcomes your comments. If you have any questions or comments about our Privacy Statement or our information practices, please contact us at or write to us at Cystic Fibrosis Foundation, 6931 Arlington Road, Bethesda, MD 20814, ATTN: Compliance.

Effective Date

The effective date of this Privacy Statement is March 29, 2016. This statement was late updated on August 1, 2016.