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.
Disaster and Emergency Preparedness Plan
Having a disaster and emergency preparedness plan during a natural disaster or emergency is especially critical when someone has a chronic illness. The Cystic Fibrosis Foundation made the following guide to help you or someone you know with cystic fibrosis prepare for a disaster or emergency.
It is important to have an emergency preparedness plan, because an emergency or natural disaster can occur at any time. The plan should be reviewed on an annual basis to ensure all supplies and information are up to date.
When you are considering using a generator, it is important to discuss the power source with your physician or CF care team, as many generators rely on gas and may interfere with a person's use of oxygen. Find out more about backup generators from energy.gov.
When a natural disaster is anticipated in your area, it is vital to plan ahead, prepare, and collect items you might need in case you need to evacuate your home.
Having a plan before the emergency or natural disaster can help ease the stress incurred by potential evacuations.
The mother of a child with CF contacted Compass for assistance with replacing Pulmozyme®, Tobi®, and an airway clearance device after the medications and the device were destroyed by Hurricane Florence. A case manager was able to assist with replacing medications and getting a new vest at no cost to the family.
If you have other needs, contact FEMA at 800‐621‐3362 for referrals for Other Needs Assistance, which can help with:
A person with CF contacted Compass for assistance with refilling a prescription during an emergency. The family had already evacuated without one medication that was out of stock at their local pharmacy. A case manager was able to facilitate sending a new prescription to the closest pharmacy to where they had evacuated.
You are not alone. If you would like additional assistance finding and accessing resources, please contact Compass at 844‐COMPASS (844-266‐7277) Monday through Thursday, 9 a.m. until 7 p.m. ET and Friday, 9 a.m. until 3 p.m. ET. All calls related to natural disasters will be handled urgently. You can also email firstname.lastname@example.org. You can also check our website to learn if Compass has extended its hours during national disasters or emergencies.
Los Administradores de Casos de la Fundación Fibrosis Quística de Compass -- quienes hablan Inglés y Español -- están disponibles para trabajar con los afectados, uno a uno. Por favor póngase en contacto con la Fundación Fibrosis Quística Compass al 844-COMPASS o (844-266-7277).
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Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
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Bethesda, MD 20814
800-344-4823 (toll free)
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