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.
A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.
August 30, 2016
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Collaborating with care centers is an important part of my work as someone who specializes in state policy at the Foundation. As the experts on the clinical needs of people with cystic fibrosis, care center staff are often best-positioned to educate lawmakers and policymakers about the importance of access to specialized care and treatments.
Earlier this summer, I visited a care center for the first time, when Lurie Children's Hospital of Chicago hosted a tour to educate Illinois state legislators about CF and give them a glimpse into a day at a clinic. It was a unique opportunity to introduce staffers from state legislative offices to the CF community -- one where we could show, rather than tell, the CF story.
We started our day with a quick “CF 101” led by Dr. Susanna McColley. She described the unique CF care model and how the clinic brings together a multidisciplinary team of experts to provide specialized, high-quality care. Dr. McColley talked through the exciting advances in CF care and what state Medicaid programs can do to ensure that CF therapies get into the hands of the people who need them. After learning about CF and the care and treatments provided at the center, we were off to see the clinic in action.
When we arrived on the clinic floor, Dr. Adrienne Savant showed us where people with CF meet with the care team and described a typical day at the clinic. I was surprised to see that the center didn't look any different from a regular doctor's office. What made the tour unique was the opportunity to “gown up” and enter a treatment room to chat with a girl with CF and her mom. We talked about her CF and what a typical visit to a clinic is like. We met Claire* (who was 12 and celebrating her half-birthday!) and her mother, Kim,* a fierce advocate for her daughter's health care. For Kim, keeping Claire healthy is a full-time job -- she spends countless hours each month staying on top of her daughter's health care needs.
As she told Claire's CF story, I pictured Kim's calendar packed with reminders for when she has to call back and forth between the insurance company and the pharmacy to ensure that Claire always has a supply of medications. I felt her frustration as she recalled the many times she has had to explain to her insurance company why Claire can't simply go to the emergency room when she is sick, why she needs to receive her care at an accredited CF center like Lurie. We all felt the burden that this family and many others face daily, and we were inspired to help. The legislative staff who joined the tour with us promised to share Claire's inspiring story and all they had learned about CF with their bosses -- Illinois state representatives.
The care center tour is a great example of how the key to advocacy is deploying the right message to the right people at the right time. Every voice in the CF community -- people living with CF, their loved ones, their care team members and others -- tells an essential piece of the story that helps lawmakers and policy makers understand this complex disease. If you are interested in becoming an advocate, please contact your local chapter.
*Names have been changed to protect patient confidentiality.
Senior Public Policy Specialist, Cystic Fibrosis Foundation
Stacey is a senior public policy specialist at the CF Foundation. She lives in Washington, D.C. with her fiancé, Steven, and their two cats. In her spare time, you will find her at barre class or exploring the local restaurant scene.
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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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