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 is aware that many labs and clinical studies have been impacted by the recent response to COVID-19. It is the CF Foundation's intention to work with funding applicants and CF Foundation-funded investigators to minimize the effects of the pandemic on research that is critical to advancing the mission of the Foundation.
We have generated a brief collection of frequently asked questions (FAQs) to help address some of the most pressing issues facing the research community. In addition, we hosted a COVID-19 town hall for researchers on June 2, 2020, to discuss the impact of the disease on their work and provide guidance on what steps the Foundation is taking to mitigate disruptions.
Please check back periodically for updates as the response to COVID-19 evolves. If you have any issues that are not addressed in this video or list, do not hesitate to reach out to your program officer or program administrator listed in your award letter or the Grants Office (email@example.com).
How does COVID-19 impact my application's review?
Peer review will continue to take place with the same level of rigor that occurs during non-public health emergency periods. The CF Foundation has transitioned all in-person review meetings to online meetings during this time.
I have been unable to collect preliminary data due to COVID-19. Will that negatively impact the review of my application?
A majority of the laboratories and research study sites supported by the CF Foundation have been partially or fully closed during the COVID-19 pandemic. We fully anticipate that applicants may lack robust preliminary data. Therefore, reviewers are being instructed to take this into consideration during the review process.
Will the CF Foundation accept late letters of intent (LOI) and applications for new awards from applicants affected by COVID-19?
The CF Foundation will consider exceptions to LOI and application deadlines on a case-by-case basis. Please contact the Grants Office (firstname.lastname@example.org) as soon as you become aware of a delay to discuss available options. In your email subject line, please include “Deadline Extension Request” and the RFA name.
Would the CF Foundation be interested in research about the novel coronavirus and cystic fibrosis?
Yes, projects relevant to SARS-CoV-2/COVID-19 and cystic fibrosis may be submitted through the basic science research grant, pilot and feasibility award, clinical research award, and clinical pilot and feasibility award mechanisms during normal submission cycles. If you have specific questions, please contact the Grants Office (email@example.com)
Will the CF Foundation provide additional funding to awardees impacted by COVID-19?
The CF Foundation will consider supplemental funding for awards with an original project end date between January 1, 2021 and December 31, 2021. All basic science and clinical research mechanisms are eligible. Applicants must submit a letter of appeal to be considered for supplemental funding. All decisions on supplemental funding will be made in the CF Foundation's sole discretion. Please direct questions to your program officer or grant administrator listed on your letter of award.
Is there a deadline to apply for supplemental funding?
Awardees seeking supplemental funding must submit their letter of appeal by November 16, 2021. Approvals will be granted on a rolling basis.
I have recently been awarded a CF Foundation grant but due to COVID-19 will be unable to start on the original start date. Can I request a delayed start date?
The CF Foundation understands that many institutions have closed labs and facilities or limited participation in clinical studies, so initiation of projects may be delayed with written approval from the CF Foundation. Please email the program administrator listed on your award letter or contact the Grants Office (firstname.lastname@example.org) to request a delayed start date. In your email subject line, please include “Start Date Revision Request” and the award number.
Due to my institutional shutdown, I am not able to submit deliverables to the CF Foundation or obtain institutional sign-off. How should this be handled?
Awardees should contact the program administrator listed on their award letter or contact the Grants Office (email@example.com) to discuss which deliverables cannot be submitted and what the tentative timeline may be for having them submitted.
If work is stopped or disrupted because of COVID-19, how will the CF Foundation assess progress at the time of a progress report submission?
The CF Foundation understands that COVID-19 has the potential to impact research it supports and is committed to working with awardees during this time. If possible, please submit your progress reports as scheduled and include an update on the work disruption. The CF Foundation will work with awardees to adjust the final award period if the Foundation determines additional time is necessary to complete the work due to COVID-19. If you have specific questions, please reach out to the program officer listed on your award letter or contact the Grants Office (firstname.lastname@example.org).
I am conducting a CF Foundation-funded clinical study. COVID-19 is likely to impact my study design and/or my ability to enroll patients in the study. How should I proceed?
Please reach out to the program officer listed on your award letter or contact the Grants Office (email@example.com) in order to discuss your specific situation.
What if my project ends outside of the timeline for eligibility or if my project is currently in a no-cost extension?
Will the CF Foundation allow project extensions due to delays related to COVID-19?
Awardees in their final year of funding should submit a no-cost extension request to the CF Foundation Grants Office within 90 days of the project end date. First time extensions for projects ending between March 1, 2020 and December 31, 2021 that are determined to be necessary by the CF Foundation due to COVID-19 will be approved for a maximum of 12 months. If you have any other questions or need additional information, please contact the program administrator listed on your award letter or contact the Grants Office (firstname.lastname@example.org).
Due to COVID-19, I will no longer be able to complete my project and would like to close out my award. What is the process for doing this?
Please contact the program administrator listed on your award letter or contact the Grants Office (email@example.com) to receive administrative guidance and to obtain the appropriate closeout forms.
Will the CF Foundation continue to make scheduled payments on awards?
Yes. At this time, the CF Foundation intends to continue to make payments according to the payment schedule outlined in your award letter as long as deliverables have been submitted and approved. Awardees should contact the program administrator listed on their award letter or contact the Grants Office (firstname.lastname@example.org) if they encounter issues or have questions with submitting deliverables.
Can personnel costs continue to be charged to the CF Foundation award during COVID-19?
Salaries for faculty and staff listed on CF Foundation awards who are unable to work as a result of COVID-19 may continue to be charged to the awards at the same or reduced rate of that indicated on the CF Foundation-approved award budget, so long as the awardee institution's policy allows for such charges regardless of funding source. The CF Foundation may request documentation to confirm the requirements of the institutional policy.
Can trainees and fellows who receive stipends rather than salaries continue to receive stipend payments if they are unable to work as a result of COVID-19?
Institutions affected by COVID-19 may continue to provide stipend payments from CF Foundation awards in accordance with the CF Foundation-approved award budget to fellows and trainees who may be unable to work as a result of COVID-19.
My grant has funds budgeted for travel, but due to institutional policies, I will no longer be able to travel. Can I re-budget those funds?
Yes, awardees may re-budget funds allocated for travel with written approval from the CF Foundation. Please direct your questions on the re-budgeting process to your grant administrator or email@example.com.
I booked travel on my CF Foundation grant that has been cancelled as a result of COVID-19. Can I submit my non-refundable travel and cancellation fees on my report of expenditures?
The CF Foundation will allow non-refundable ticket prices, change fees, and cancellation fees on the report of expenditures, but asks that awardee institutions take the following steps prior to expensing these amounts:
If you have additional questions, please contact the Grants Office (firstname.lastname@example.org).
Last updated January 26, 2021.
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