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.
Understanding insurance basics and what to look for when choosing coverage can provide you with a solid foundation so that you can apply your individual health goals, needs, and situation to select the right plan for you.
There are several key things to look for in all available plans that can help you better compare and select your coverage.
Each plan's Summary of Benefits and Coverage (SBC) will help you better understand what the plan covers. You will need to find out whether your providers are in-network, including but not limited to your cystic fibrosis care team, primary care provider, hospitals, and pharmacies. Having a full list of your medications available will also help you check the plan's formulary, a list of medications covered by the plan.
When you are selecting a health plan, it is important to note that a lower premium often means higher out-of-pocket cost for treatments and prescriptions. Similarly, a higher premium often means lower out-of-pocket cost for treatments and prescriptions. To get a sense of the overall costs of a plan, you can multiply the monthly premium by 12 and add that to the out-of-pocket maximum. There may be other costs that are not covered at all by insurance that you should keep in mind. Reviewing the plan's SBC will help provide additional information about added costs.
Once you have the plan summary, a website link, or a PDF document for the provider network and plan's formulary, you can compare each plan's coverage. Key questions for a person with cystic fibrosis or their family members to ask when considering a plan include:
By working through these questions with a Compass case manager, a member of your CF care team, or a representative at your insurance company, you will have the answers to the questions that can help you find the best insurance plan for you.
Some insurance providers may not be fully aware of the realities of life with CF or of CF treatment options. Fortunately, there are some basic strategies for communicating with a provider or insurance company that can help you advocate on your own behalf:
Navigating CF is
an interactive series
that helps people with cystic fibrosis, their families, and care teams navigate
complex situations related to life with CF. Compass case managers share
their knowledge and expertise in a short series of guided, interactive videos
intended to help users better understand insurance, financial, legal, and other
topics related to life with CF. Start the series today.
A Compass case manager can work directly with you to help you understand your current coverage and choices that you may have, or resolve any misunderstandings, communication errors, or issues. Connect with Compass by calling 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, or email firstname.lastname@example.org.
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