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  • What Is CF?
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    ABOUT CYSTIC FIBROSIS

    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.

    Role of Genetics in CF

    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.

    CF Genetics: The Basics
    CF Mutations Video Series
    Find Out More About Your Mutations
    Personalized Medicine
    Types of CFTR Mutations

    DIAGNOSIS

    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.

    TESTING FOR CYSTIC FIBROSIS

    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.

    Carrier Testing for Cystic Fibrosis
    CFTR-Related Metabolic Syndrome (CRMS)
    How Babies Are Screened in IRT-Only vs. IRT-DNA States
    Newborn Screening for CF
    Sweat Test
  • Life With CF
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    Caring for a Child With CF

    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.

    CF Infant Care
    PARENT AND GUARDIAN GUIDANCE

    Working With Your Child's School

    Individualized Education Programs (IEPs) and 504 Plans
    School Transitions for People With CF and Their Families

    Daily Life

    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.

    Adult Guide to Cystic Fibrosis

    CF and School

    For Teachers
    Managing My CF in College
    CYSTIC FIBROSIS-RELATED DIABETES

    Emotional Wellness

    Procedural Anxiety
    Substance Misuse
    Depression
    Coping While Caring for Someone With Cystic Fibrosis
    Anxiety
    Working With Your Care Team

    Fitness and Nutrition

    Fitness
    Nutrition and Your Digestive System

    Germs and Staying Healthy

    CF and Coronavirus (COVID-19)
    How Can You Avoid Germs
    What Are Germs?

    Traveling With CF

    Preparing to Travel
    In Transit and at the Destination
    Special Considerations While Traveling Abroad

    Transitions

    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.

    Managing My CF in College

    Accommodations for College
    Scholarships and Financial Aid

    Reproductive Health and Fertility

    Contraception and Protection
    How Does CF Affect the Female Reproductive System?
    How Does CF Affect the Male Reproductive System?
    Sex and CF: Some Practical Advice

    Family Planning and Parenting With CF

    Making Your Family Planning Decisions
    Pregnancy and CF
    Alternative Ways to Build a Family
    Parenting as an Adult With CF

    Colorectal Cancer and CF

    About Colorectal Cancer
    Preparing for a Colonoscopy When You Have CF
    What Happens After My Colonoscopy?

    Treatments and Therapies

    People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.

    Airway Clearance

    Active Cycle of Breathing Technique
    Airway Clearance Techniques
    Autogenic Drainage
    Basics of Lung Care
    Chest Physical Therapy
    Coughing and Huffing
    High-Frequency Chest Wall Oscillation
    Positive Expiratory Pressure

    Clinical Trials

    Clinical Trials 101
    What to Consider When Joining a Clinical Trial
    After the Clinical Trial: What’s Next?

    Lung Transplantation

    Being Referred and Evaluated
    Surgery, Recovery, and Life Post-Transplant
    Waiting for the Transplant
    What Is a Lung Transplant?
    What to Consider Regarding a Lung Transplant

    Medications

    Antibiotics
    Bronchodilators
    CFTR Modulator Therapies
    Mucus Thinners
    Nebulizer Care at Home
    Vascular Access Devices PICCs and Ports

    Partnerships for Sustaining Daily Care

    More Than Taking Medications
    The Partnerships for Sustaining Daily Care Initiative

    Treatment Plan

    CF Care Center Visits
    Managing Your Treatment Plan
    Partnering With Your Care Team
    Trikafta
  • Care
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    Care Centers

    Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.

    CF CARE CENTER finder

    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.

    Clinical Care Guidelines

    The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.

    Age-specific Care Guidelines

    Adult Care Clinical Care Guidelines
    Infant Care Clinical Care Guidelines
    Management of CRMS in First 2 Years and Beyond Clinical Care Guidelines
    Preschool-Aged Care Clinical Care Guidelines
    CFTR Modulator Therapy Care Guidelines

    Diagnosis Care Guidelines

    CF Diagnosis Clinical Care Guidelines
    Newborn Screening Clinical Care Guidelines
    Sweat Test Clinical Care Guidelines

    Infection Prevention and Control Care Guidelines

    Allergic Bronchopulmonary Aspergillosis Clinical Care Guidelines
    Eradication of Initial P aeruginosa Clinical Care Guidelines
    Infection Prevention and Control Clinical Care Guidelines
    Nontuberculous Mycobacteria Clinical Care Guidelines

    Nutrition and GI Care Guidelines

    Colorectal Cancer Screening Clinical Care Guidelines
    Enteral Tube Feeding Clinical Care Guidelines
    Nutrition in Children and Adults Clinical Care Guidelines
    Nutrition in Pediatrics Clinical Care Guidelines
    Pancreatic Enzymes Clinical Care Guidelines
    Vitamin D Deficiency Clinical Care Guidelines

    Other CF-related Conditions Care Guidelines

    Bone Disease in CF Clinical Care Guidelines
    Cystic Fibrosis-Related Diabetes Clinical Care Guidelines
    Liver Disease Clinical Care Guidelines

    Respiratory Care Guidelines

    CF Airway Clearance Therapies Clinical Care Guidelines
    Chronic Medications to Maintain Lung Health Clinical Care Guidelines
    Guidelines for the Care of Individuals With Advanced CF Lung Disease
    Lung Transplant Referral Guidelines
    Pneumothorax and Hemoptysis Clinical Care Guidelines
    Pulmonary Exacerbations Clinical Care Guidelines
    SCREENING & TREATING DEPRESSION & ANXIETY GUIDELINES
    Best Practices in the Management of the Gastrointestinal Aspects of CF

    Clinician Resources

    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.

    Clinician Awards

    Clinician Career Development Awards
    Clinician Training Awards
    Mutation Analysis Program

    Network News

    Network News: February 2020
    Network News: NACFC 2019
    Network News: August 2019
    Network News: May 2019
    Network News: Previous Issues

    Partnerships for Sustaining Daily 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.

    MORE THAN TAKING MEDICATIONS
    The Partnerships for Sustaining Daily Care Initiative
    Success With Therapies Research Consortium

    Your CF Care Team

    Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.

  • Assistance Services
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    About Compass

    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.

    What Is Compass?
    Meet the Compass Team

    How Compass Helps People With CF and Their Families

    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.

    How Compass Can Help

    Understanding Insurance

    Medicaid
    Medicare
    Your Insurance Plan
    Social Security Disability
    Know Your Legal Rights

    Financial Matters

    Financial Planning
    Finding Financial Assistance
    Postsecondary Transitions
    Other Life Issues
    Disaster and Emergency Preparedness Plan

    How Compass Can Help CF Care Teams

    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.

    Connect With Compass

    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.

  • Research
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    About Our Research

    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.

    Path to a Cure
    Research We Fund
    RESEARCH OVERVIEW
    RESEARCH MILESTONES
    Track Record of Progress
    New Developments in Clinical Research
    Cystic Fibrosis Foundation Therapeutics Lab

    Developing New Treatments

    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.

    CFTR Modulator Types

    Clinical Trials

    Clinical Trials 101
    What to Consider When Joining a Clinical Trial
    After the Clinical Trial: What’s Next?
    CLINICAL TRIAL FINDER
    DRUG DEVELOPMENT PIPELINE

    Drug Development Pipeline 101

    About the Drug Development Pipeline
    How Drugs Get on the Pipeline
    Trailblazer CF Clinical Trials Campaign

    Research Into the Disease

    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.

    Research Into CF Complications

    Gastrointestinal Issues and Cystic Fibrosis-Related Diabetes
    Infection Research Initiative
    Infections
    Inflammation
    Mucus

    Restore CFTR Function

    Basics of the CFTR Protein
    CFTR Modulator Types
    Exploring Treatments for Nonsense and Rare Mutations
    Gene Therapy for Cystic Fibrosis
    Gene Editing for Cystic Fibrosis
    Gene Delivery for Cystic Fibrosis Therapy
    Stem Cells for Cystic Fibrosis Therapy

    Role of Genetics in CF

    CF Genetics The Basics
    CF Mutations Video Series
    Find Out More About Your Mutations
    Personalized Medicine
    Types of CFTR Mutations

    Researcher Resources

    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.

    Awards and Grants

    Applicant Resources
    Career Development Awards
    COVID-19 FAQs for Applicants and Awardees
    Funding Opportunities
    Research Awards
    Training Awards
    CF BASIC RESEARCH CENTERS
    Community Input into Research
    Industry Funding Opportunities
    National Resource Centers

    North American CF Conference

    2020 NACFC
    Carolyn and C. Richard Mattingly Leadership in Mental Health Care Award
    Mary M. Kontos Award
    Paul di Sant’Agnese Distinguished Scientific Achievement Award
    Quality Care Awards
    Richard C. Talamo Distinguished Clinical Achievement Award
    Robert J. Beall Therapeutics Development Award

    Patient Registry

    2019 Patient Registry Annual Data Report
    2019 Cystic Fibrosis Foundation Patient Registry Snapshot
    Care Center Data
    Understanding Changes in Life Expectancy

    Research Consortia

    CF Biomarker Consortium
    CFTR 3-D Structure Consortium
    CFTR Folding Consortium
    Epithelial Stem Cell Consortium
    Mucociliary Clearance Consortium
    NTM Consortium
    SUCCESS WITH THERAPIES RESEARCH CONSORTIUM

    Therapeutics Development Network

    TDN Coordinating Center Study Support
    TDN Womens Health Research Working Group
    Working With the TDN

    Tools and Resources

    Antimicrobial Tools and Resources
    Bioinformatics Tools for CF
    Cell Model Resources
    CFTR Antibodies Distribution Program
    CFTR Assays
    CF Foundation Biorepository
    CFTR Chemical Compound Program
    CFTR Protein Domains
    Patient Registry Data Requests
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Privacy Statement

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.

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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.

Scope

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 www.cff.org (“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 info@cff.org 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 does 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.

Children

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 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 info@cff.org. 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 your personal information. Although it is not possible to guarantee that the security measures we employ will be fully sufficient to protect your personal information at all times, we use 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. 

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 info@cff.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 info@cff.org 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 info@cff.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.

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.

The prior version of this Privacy Statement is available here.

Contact Us

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

Effective Date

The effective date of this Privacy Statement is February 25, 2020.

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Cystic Fibrosis Foundation

4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814

301-951-4422

800-344-4823 (toll free)

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