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 (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.
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.
The information you provide 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 the personal information that we receive as stated in this Privacy Statement, in furtherance of our mission.
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, grant applicants and recipients, those who register at www.cff.org (“the Site”), and others.
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, health information or other descriptive 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 otherwise interact with us, 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 about individuals, as well as anonymous, statistical information derived from personal data, to improve, measure, or expand our services and for administrative and operational functions. We will use personal information only for purposes consistent with this Privacy Statement.
Sometimes CFF may wish to share the stories of those within our community publicly in order to help others. Before we share your personal information, however, for this purpose or any other purpose not described in this Privacy Statement, we will obtain your consent.
In addition to what is described elsewhere in this Privacy Statement, CFF has some provisions applicable to personal information connected to fundraising operations. These are:
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.
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 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.
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.
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 information except as necessary to perform services on our behalf or to comply with legal requirements.
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.
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. These measures include but are not limited to encrypting data-in-transit (via TLS), encrypting data-at-rest, obfuscation of password information, use of intrusion detection/prevention systems, tokenization of credit card numbers, and restrictions on the access to personal information to those CFF personnel with a need to know. 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 for any services that require a username and password, we encourage you to take strong precautions to protect these 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. We review our data security arrangements regularly.
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.
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.
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: Compliance.
If you would like to request the deletion of personal information you have previously submitted to CFF, 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: 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.
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, 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. 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 constitutes your consent to the new Privacy Statement.
The prior version of this Privacy Statement is available here.
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 email@example.com or write to us at Cystic Fibrosis Foundation, 4550 Montgomery Avenue, Suite 1100 N, Bethesda, MD 20814, ATTN: Compliance.
The effective date of this Privacy Statement is December 8, 2017.
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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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