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.
Three of our Impact Grant awardees tell us how the program has allowed them to make a difference.
Piper Beatty Welsh, J.D., M.P.A.
April 4, 2017
Community Voice Brings Your Voice Into Everything That We Do
Why I’ve Become Grateful for My CF
If there's one thing I've learned through my years of working within and alongside the cystic fibrosis community, it's that people with CF and their families are a creative, industrious, and, above all, determined group that is always ready to meet the next challenge. Being able to connect with and hear from so many of you continues to be one of the most powerful and fulfilling aspects of my work, and it is also part of what makes the Cystic Fibrosis Foundation's
Impact Grants program so exciting.
The Impact Grants program, which began in 2016 with our first round of
seven outstanding recipients, seeks to harness this exceptional community spirit by providing grants of up to $10,000 per year to individuals or organizations with projects that benefit either a large cross-section or an underserved population of the CF community. We hope to be able to grow this venture even more in 2017 -- and we need your great ideas to make that happen.
Applications for the 2017 Impact Grants program are available through our online grants portal, proposalCENTRAL. Applications will be accepted through 5 p.m. EDT, Wed., May 31. All completed applications will be reviewed by the
CF Adult Advisory Council, an external review board comprised of adults with CF. Their recommendations will then be passed on to
Drucy Borowitz, M.D., vice president of Community Partnerships, for final approval.
To give you a little inspiration, we reached out to three of our awardees to learn more about their projects, their plans for the future, and how the Impact Grants program has allowed them to make a difference.
The sINgSPIRE program, through Breathe Bravely, will provide 15 students 10 weeks of free, private voice lessons with a qualified voice instructor, who will work on strengthening participants' respiratory systems and improving their self-awareness and confidence.
Piper: Tell us a story about someone whom you have been able to help as a result of this grant.
Ashley: The Impact Grant … has allowed students from all over the country to take part in something truly unprecedented -- private voice lessons focused on enhancing a student's breath awareness and respiratory strength through the art of singing. Our first five students range in age from 7 to 36 years old. Halfway through the 10-week program, each instructor has seen progress in their student's respiratory self-awareness, breath management, and most beautiful of all -- the art of singing.
Piper: Thanks to the Impact Grant, you will now be able to …
Ashley: … to create and share something that's so life-changing and profusely powerful with the CF community -- all in hopes that they too will know the significance and impact of the art of singing.
Piper: What is your vision for the future of your organization/the people you're supporting?
Ashley: Whether it be within lesson one, lesson 10, or lesson 45, sINgSPIRE hopes each student comes away with a deeper understanding and awareness of his or her own breath through the art of singing. We want every student to feel the lifelong impact that the art of singing can have on their lives with CF -- enhancing their quality of life while experiencing the multifaceted benefits of singing.
Project CF Spouse provides support and education for spouses of people with CF.
Megan: We are still very early in our organization, so it is hard to assess the gravity of being able to establish this organization as a nonprofit. However, from its inception, the response of all members has been an overwhelming sigh of relief knowing that they have connected with other people walking similar paths with CF.
Megan: … to grow our vision for the organization. We have very specific goals, and with the Impact Grant, we will be able to start laying the groundwork for these projects.
Megan: Ultimately, our vision for the organization is just to have it continue to grow and change to meet the needs of its members. We plan to do this by being able to expand upon the services we offer by using feedback from our members.
Empower Project, part of Attain Health, is an online health coaching and personal training program for individuals with CF.
Kat: I think it might be best to hear from the participants themselves. Here is what they shared with me:
Anna, 30: Through the Attain Health Program, Kat and [Co-Founder] Mike [Porco] have taught me that change is possible. Slowly but surely, I am learning to balance the complex reality of life as an adult with cystic fibrosis. I have learned that small victories are in fact big victories, and that they pave the way for sustainable and manageable change.
Colin, 34: Having structure with exercise and health coaching has helped me take more control of my life with CF.
Brian, 42: I know that we are only a couple weeks in, but I truly believe that you are saving my life. This will be giving me the greatest chance to postpone transplant and be in my best shape mentally, physically, and emotionally when that time comes.
Piper: Thanks to the Impact Grant, we will now be able to …
Kat: … to partner with 15 amazing adults who have formed their own goals to actualize their best state of health. Goals for each client are different and range from adhering to treatments and medications to integrating strength and conditioning workouts three times a week, from cutting out soda to implementing a healthy high-caloric diet. We meet the client where they are.
Kat: Mike and I hope that Attain Health is able to continue to support adults for years to come, helping to bridge the gap between clinic recommendations and home implementation.
If you have any additional questions, or would like more information about the Impact Grants program, please email
Piper Beatty Welsh, J.D., M.P.A.
National Strategic Collaborations Liaison
Piper was first diagnosed with CF at 6 weeks old in 1981, and has since been the survivor of two double-lung transplants. Piper attended Emory University, received her J.D. from Columbia University Law School and then went on to earn her master's in public administration from New York University's Wagner School of Public Service. She is the owner and author of the popular CF and transplant blog, A Matter of Life and Breath, and lives in Colo. with her husband and puppy.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
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