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.
Learn how nurse practitioner and CF care provider Jennifer Hamilton helped lead the implementation and execution of infection prevention and control guidelines at her CF clinic.
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Nurse practitioner and CF care provider Jennifer Hamilton, A.P.R.N., D.N.P., C.P.N.P., has helped lead the implementation and execution of infection prevention and control guidelines at the Intermountain Cystic Fibrosis Center in Salt Lake City. She recently sat down to talk with us about how her care team works together to keep people with CF safe.
A big part of successfully implementing IPC guidelines is making sure all those involved are educated about how and why these policies are important. We first identified our stakeholders and got them involved in initial conversations about IPC plans. From there, we had conversations with the broader institution and with CF families.
It starts as soon as a patient enters our facility. Masks and hand sanitizer are available at the entrance of our building and signs encourage people to use them.
Once a patient makes it through the lobby, they come up to the second floor where our clinic is located.
The patient checks in with our receptionist and is immediately guided to an exam room. Patients do not wait in the clinic's waiting room, or in any waiting room in the facility.
Once the patient is in an exam room, a medical assistant is immediately notified and will gown and glove before entering the room. We try to keep patients in their rooms as much as possible while they are in clinic to minimize exposure to harmful bacteria and germs. In addition, hand sanitizer units are stationed throughout the facility, including at our check-in and security desks, in exam rooms and in hallways. Our nurses encourage patients to use hand sanitizer frequently during their visit, especially upon entering and exiting rooms, and all staff use sanitizer when entering or exiting a room.
When the visit is finished, the patient is discharged by a nurse who makes sure the hall and waiting areas are clear before the patient exits the building.
We have a white board in the staff work room that shows the names of all the patients who in to clinic that day and all of the different providers who need to see the patient. We use the board to keep track of our patients and personnel at all times. A check mark indicates a medical professional has entered the patient's room. An “X” indicates the medical professional has exited the room. Each staff member is responsible for keeping the white board current.
At our in-patient facility, we don't have as much control over the environment, so we work with closely with an IPC hospital team. We rely on that team to help implement IPC policies in the in-patient setting.
All CF patients are admitted to a single unit in the in-patient facility, and a designated CF nurse helps educate nursing staff and other member of the health care team about IPC guidelines. We also work hard to empower families to remind care givers to wear their personal protective equipment. Families can be great self advocates.
Know who your stakeholders are and try to include them in the process. You may also want to get help from CF families. We have a parent advisory board that we rely on heavily if we receive push back about certain processes or protocols. Sometimes, requests about policy changes mean more if they come from families rather than the CF care team. Families have a very powerful voice.
Former Writer/Editor, Cystic Fibrosis Foundation
Dora previously worked at the Foundation as a writer and editor. During her tenure, she loved to listen to others share their memories and experiences, and consumed storytelling in all of its different forms. She constantly looks for the uniqueness in everyone's story. Dora has a B.A. in communications from the University of Maryland, College Park, and an M.S. in public policy and administration from the London School of Economics. Born in Budapest, Hungary, Dora was raised mainly in the Washington, D.C., metropolitan area where she currently resides today.
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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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