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.
Last updated on April 14, 2014
1. Acceptance of Terms
Cystic Fibrosis Foundation ("CFF") provides access to this web site (the "Site") subject to the acceptance of this User Agreement ("Agreement") by any person accessing, browsing, or otherwise using the Cystic Fibrosis Foundation Site ("User" or "you"). This Agreement may be updated by CFF from time to time without prior notice to you. CFF encourages you to review this Agreement periodically for any updates or changes. By accessing or using the Site, you agree to be bound by the terms of this Agreement, as revised. When using a particular feature of the Site, you may also be subject to any posted guidelines, rules, terms of service, codes of conduct or other contractual provision as noted. In the event of a conflict between any other agreement, rule, or terms of service and this Agreement, the provisions of this Agreement shall govern. If you have any questions about this Agreement please contact CFF at firstname.lastname@example.org before using the Site.
The contents of the Site, such as text, graphics, photographs, software and other material (the "Content"), is presented for informational purposes only. CFF will use reasonable efforts to include up-to-date and accurate information in this Site, but makes no representations, warranties, or assurances as to the accuracy, currency or completeness of the Content provided, including third party information, such as, but not limited to, press releases, articles, or information from third-party web sites linked to or from this Site.YOU SHOULD NOT RELY ON ANYTHING CONTAINED ON THE SITE TO SUGGEST A COURSE OF TREATMENT FOR ANY MEDICAL CONDITION. THE CONTENT CANNOT SUBSTITUTE FOR CONSULTATION WITH A PHYSICIAN OR OTHER QUALIFIED HEALTH PROVIDER. IF YOU HAVE OR SUSPECT THAT YOU HAVE A MEDICAL PROBLEM, PROMPTLY CONTACT YOUR HEALTH CARE PROVIDER. YOU SHOULD NEVER DISREGARD MEDICAL ADVICE, AVOID OR DELAY VISITING A MEDICAL PROFESSIONAL, OR DEVIATE FROM ANY TREATMENT PROGRAM PRESCRIBED OR OTHERWISE RECOMMENDED TO YOU BY YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH PROVIDER BECAUSE OF SOMETHING YOU HAVE READ ON THE SITE. YOU SHOULD READ CAREFULLY ALL PRODUCT PACKAGING.
3. No Endorsement of Links to Other Web Sites
Any links to other sites are provided as merely a convenience to you. This Site may provide links or references to other sites but CFF has not reviewed all of these other sites, has no responsibility for the content of such other sites and shall not be liable for any damages or injury arising from the content from these other sites. You understand that, except for information, products or services clearly identified as being supplied by CFF, CFF does not operate, control or endorse any information, products or services on the Internet in any way. CFF does not endorse or make any representations about these sites, or any information or other products or materials found on these sites, or any results that may be obtained from using these sites. If you decide to access any of these other sites linked to this Site, you do so entirely at your own risk.
5. Use of the Site
You also understand that CFF cannot and does not guarantee or warrant that files available for downloading from the Site will be free of infection or viruses, worms, Trojan horses, time bombs, cancelbots or other computer programming routines that are intended to damage, detrimentally interfere with, surreptitiously intercept or expropriate any system, data or personal information (collectively, "Hazards"). You are responsible for implementing sufficient procedures and checkpoints to satisfy your particular requirements for accuracy of data input and output, and for maintaining a means external to the Site for the reconstruction of any lost data.
6. System Integrity
You may not use any device, software or routine to interfere with the proper working of the Site. You may not take any action that imposes an unreasonable burden upon the infrastructure used to support the efficient operation of the Site.
7. Acceptable and Lawful Use of Site
Any personal information, computer information, or other information that you provide to CFF in connection with the use of the Site: (a) shall not be obscene or indecent; (b) shall not contain any Hazards; (c) shall not infringe any third party's copyright, patent, trademark, trade secret or other proprietary rights or rights of publicity or privacy; (d) shall not be defamatory, libelous, unlawfully threatening or unlawfully harassing; and (e) shall not create any liability for CFF or cause CFF to lose (in whole or in part) the services of its Internet Service Provider(s) or other suppliers. Users shall comply will all applicable laws, statutes, ordinances and regulations regarding use of the Site.
8. RISK: INTERNET USE
YOU ASSUME TOTAL RESPONSIBILITY AND RISK FOR YOUR USE OF THE SITE AND THE INTERNET. YOU ACKNOWLEDGE AND AGREE THAT ANY UPLOADS OR TRANSMISSIONS YOU MAKE MAY BE INTERCEPTED AND USED BY AN UNAUTHORIZED THIRD PARTY AND THAT ALL OF THE RISK ASSOCIATED THEREWITH IS SOLELY YOURS.
9. NO WARRANTIES
CFF DOES NOT MAKE ANY EXPRESS OR IMPLIED WARRANTIES, REPRESENTATIONS OR ENDORSEMENTS WHATSOEVER (INCLUDING, BUT NOT LIMITED TO, WARRANTIES OF TITLE OR NON-INFRINGEMENT, OR THE IMPLIED WARRANTIES OF MERCHANTABILITY OR FITNESS FOR A PARTICULAR PURPOSE) WITH REGARD TO THE SITE, THE CONTENT, ANY MERCHANDISE PROVIDED THROUGH THE SITE OR ON THE INTERNET GENERALLY, AND CFF SHALL NOT BE LIABLE FOR ANY COST OR DAMAGE ARISING EITHER DIRECTLY OR INDIRECTLY FROM ANY SUCH TRANSACTION. IT IS SOLELY YOUR RESPONSIBILITY TO EVALUATE THE RELIABILITY, ACCURACY, TIMELINESS, COMPLETENESS OR USEFULNESS OF ALL SERVICES AND CONTENT PROVIDED THROUGH THE SITE OR ON THE INTERNET GENERALLY. CFF DOES NOT WARRANT THAT THE SITE WILL BE UNINTERRUPTED OR ERROR-FREE OR THAT DEFECTS IN THE SITE WILL BE CORRECTED. THE SITE AND THE CONTENT MADE AVAILABLE ON THE SITE ARE PROVIDED ON AN "AS IS" AND "AS AVAILABLE" BASIS.
10. System Outages
CFF periodically schedules system downtime for maintenance and other purposes. Unplanned system outages may also occur. CFF shall have no liability whatsoever for the resulting unavailability of the Site or for any loss of data or transactions caused by planned or unplanned system outages or the resultant delay, misdelivery or nondelivery of information caused by such system outages, or any third party acts or any other outages of web host providers or the Internet infrastructure and network external to the Site.
You agree to indemnify, defend and hold CFF and its affiliates, officers, directors, employees and agents harmless from and against any and all claims, demands, actions, costs, liabilities, losses and damages of any kind (including attorney's fees) resulting from (i) your use, misuse or abuse of the Site, or (ii) your breach of any provision of this Agreement. You will cooperate as fully as reasonably required in CFF's defense of any claim. CFF reserves the right, at its own expense, to assume the exclusive defense and control of any matter otherwise subject to indemnification by you, and you shall not in any event settle any matter without the written consent of CFF.
12. Intellectual Property
The Content is the property of CFF and/or its affiliates or partners, and is protected by federal and international copyright and trademark laws, or other proprietary rights. These rights are protected in all forms, media and technologies existing now or hereinafter developed. You may print and download portions of material from the different areas of the Site solely for your own non-commercial use. No portion of the Content may be reprinted, republished, modified, or distributed in any form without the express written permission of CFF. You may not, and this Agreement does not give you permission to, reproduce, reverse engineer, decompile, disassemble, modify, transmit, sell, distribute, license or create derivative works with respect to the Site. Certain Content may be licensed from third parties and all such third party Content and all intellectual property rights related to the Content belong to the respective third parties. You may not remove any copyright, trademark or other intellectual property or proprietary notice or legend contained on the Site or the Content. Any rights not expressly granted by this Agreement or any applicable end-user license agreements are reserved by CFF.
13. Governing Law and Choice of Forum
This Agreement shall be governed by and construed in accordance with the laws of the State of Delaware, exclusive of its choice of law rules and matters affecting copyrights, trademarks and patents under United States federal law.
You hereby irrevocably and unconditionally consent to submit to the exclusive jurisdiction of the courts of the State of Maryland and of the United States of America located in the State of Maryland for any litigation or disputes arising out of or relating to use of the Site and not to commence any litigation relating thereto except in such courts. You hereby irrevocably and unconditionally waive any objection to the establishment of venue of any such litigation in the Maryland Courts and agree not to plead or claim in any Maryland Court that such litigation brought therein has been brought in an inconvenient forum.
14. International Users
CFF makes no claims that the Content is appropriate or may be downloaded outside of the United States. Access to the Content may not be legal in certain countries or for certain persons. If you access the Site from outside of the United States, you do so at your own risk and are responsible for compliance with the laws of your jurisdiction.
In the event that one or more portions of this Agreement shall, for any reason, be held to be invalid, illegal or unenforceable in any respect, such validity, illegality or unenforcability shall not affect any other provision contained in this Agreement.
The headings used throughout this Agreement are solely for the convenience of reference and are not to be used as an aid in the interpretation of this Agreement.
17. No Waiver
Any delay or failure by you or CFF, at any time or times, to require performance of any provision hereof shall in no manner affect your or CFF's right at a later time to enforce such provision. No delay or failure of you or CFF in exercising any right hereunder shall constitute a waiver of such right or any other rights hereunder.
18. Entire Agreement, Updates and Modifications
This Agreement and any documents expressly incorporated by reference constitute the entire agreement between CFF and you pertaining to the subject matter hereof.
In its sole discretion, CFF may unilaterally amend or modify this Agreement or any other documents referenced herein at any time by posting on the Site. Any amended or modified terms will be effective upon posting. Continued use of the Site constitutes acceptance of any modified terms and conditions. If you have any questions about this Agreement, contact CFF at email@example.com.
You may not assign your rights or delegate your responsibilities hereunder without the express written permission of CFF. CFF may, at any time, assign its rights or delegate its obligations hereunder without notice to you.
20. Third Party Beneficiary Rights
No person not a party to this Agreement is intended to be a beneficiary of this Agreement, and no person not a party to this Agreement shall have any right to enforce any term of this Agreement.21. Limitation of Liability
UNDER NO CIRCUMSTANCES SHALL CFF OR ANY OTHER PARTY INVOLVED IN CREATING, PRODUCING, OR DISTRIBUTING THE SITE BE LIABLE FOR ANY DIRECT, INDIRECT, INCIDENTAL, SPECIAL, PUNITIVE OR CONSEQUENTIAL DAMAGES FOR LOSS OF PROFITS, GOOD WILL, USE, DATA OR OTHER INTANGIBLE LOSSES (EVEN IF CFF HAS BEEN ADVISED OF THE POSSIBLITY OF SUCH DAMAGES) THAT RESULT FROM (I) THE USE OF OR INABILITY TO USE THE SITE; (II) THE COST OF PROCUREMENT OF SUBSTITUTE MERCHANDISE AND SERVICES RESULTING FROM ANY MERCHANDISE, DATA, CONTENT OR SERVICES PURCHASED OR OBTAINED OR TRANSACTIONS ENTERED INTO THROUGH OR FROM THE SITE; (III) UNAUTHORIZED ACCESS TO OR ALTERATION OF YOUR TRANSMISSIONS OR DATA; (IV) STATEMENTS OR CONDUCT OF ANY THIRD PARTY ON THE SITE; OR (V) ANY OTHER MATTER RELATING TO THE SITE. YOU HEREBY ACKNOWLEDGE THAT THIS PARAGRAPH SHALL APPLY TO ALL CONTENT, MERCHANDISE, AND SERVICES AVAILABLE THROUGH THE SITE. BECAUSE SOME STATES MAY NOT ALLOW THE EXCLUSION OR LIMITATION OF LIABILITY FOR CONSEQUENTIAL OR INCIDENTAL DAMAGES, IN SUCH STATES LIABILITY IS LIMITED TO THE FULLEST EXTENT PERMITTED BY LAW.
22. Accurate Information
In consideration of your use of the Site, you agree to: (a) provide true, accurate, and current and complete information as prompted on the Site; and (b) maintain and update such information to keep it true, accurate, current and complete. If you provide any information that is untrue, inaccurate, not current or incomplete, or CFF has reasonable grounds to suspect that such information is untrue, inaccurate, not current or incomplete, CFF may suspend or terminate your use of the service and/or decline to permit your continued use of the Site and future access to the Site.23. CFF's Policy Regarding Copyright Infringement and Designated Agent
CFF's policy regarding copyright infringement and CFF's designated agent for receipt of copyright infringement claims pursuant to the Digital Millennium Copyright Act is incorporated herein and can be found at Copyright Policy.
Should you respond to the Site by providing feedback, such as questions, requests, opinions, comments, suggestions, ideas, or the like, such information shall be deemed to be the property of CFF. CFF shall have no obligation of any kind to the User with respect to such information and shall be free to reproduce, use, disclose and distribute the information to others without limitation and without license. CFF shall be free to use any ideas, concepts, know-how or techniques contained in such information for any purpose whatsoever.Policy Regarding Intellectual Property On This Web site
The Cystic Fibrosis Foundation (CFF) respects the Intellectual Property rights of others and requires those that visit our website, use our system for Internet access and e-mail, or obtain other educational or fund-raising information from us to do the same. The CFF may, in appropriate circumstances and at its sole discretion, remove or disable access to material on its web site and its e-mail systems that infringes upon its Intellectual Property rights or the rights of others. The CFF also may, at its discretion, remove or disable links or references to an on-line location that contains infringing material or infringing activity.
All information and content, including any software available through the Site, (“Content”) is protected by copyright and/or trademark and is owned as Intellectual Property of the owner. All rights are reserved. Users are prohibited from modifying, copying, distributing, transmitting, displaying, publishing, selling, licensing, creating derivative works, or using any Content available on or through the Site for commercial or public purposes.Policy Regarding Copyright Materials of Others on this Web site
The CFF respects the copyrights of others and does not knowingly infringe upon these rights. However, if you believe that your work has been used on our web site in any manner that constitutes copyright infringement, please notify CFF's Intellectual Property agent by written notice. The notice should include the following information:
Policy Regarding Use of CFF Trademarks
The trademarks, logos, and service marks (“Marks”) displayed on this web site, and related web sites belonging to the Cystic Fibrosis Foundation, including the CFF logo, 65 Roses® and Great Strides®, among others, are registered trademarks of the Cystic Fibrosis Foundation, are the property of the Cystic Fibrosis Foundation, and are protected by U.S. and international trademark laws. Their uses are restricted to those programs and events sponsored by the CFF, and CFF trademarks may not be used for personal financial gain.
Use of the Marks is prohibited without the express written consent of the Cystic Fibrosis Foundation except as permitted by applicable laws. Nothing contained on the Site should be construed as granting, by implication, estoppel, or otherwise, any license or right to use the Marks without the express written consent of the Cystic Fibrosis Foundation.
At times, the CFF, in consultation with legal counsel, may grant limited-use licensing agreements to those individuals or groups who wish to help further the mission of the CFF. Solely at the discretion of the CFF, limited permission for use of CFF's Marks may be granted for those projects which provide a substantial benefit to the CFF or the cystic fibrosis community in general.
For consideration, please submit, in writing, a letter of intent, which details how the CFF's Marks will be used, the length of time they will be used, and the benefit of the project to the CFF or the cystic fibrosis community at least 60 days prior to launch. Letters of intent may also be sent to:
Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 20814
Attn: Copyright Officer
By Phone: 301-951-4422
By E-mail: firstname.lastname@example.org
Follow Us On
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails