Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
The Cystic Fibrosis Foundation (“CF Foundation” or “we”) 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.
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:
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.
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.
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.
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.
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:
We may otherwise use your information with your consent or at your direction.
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:
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.
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.
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.
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.
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.
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.
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[FK3] (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 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 email@example.com. 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.
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.
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 firstname.lastname@example.org 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 email@example.com 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 firstname.lastname@example.org, 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.
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.
The prior version of this Privacy Statement is available here.
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 email@example.com or firstname.lastname@example.org, or you may write to us at Cystic Fibrosis Foundation, 4550 Montgomery Avenue, Suite 1100 N, Bethesda, MD 20814, ATTN: Privacy Officer.
The effective date of this Privacy Statement is August 13, 2021.
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Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
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