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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
Since Cystic Fibrosis Foundation Compass launched last year, we've learned so much from the community and have helped people with cystic fibrosis find creative solutions for all kinds of problems. That's why we are excited to unveil our new “Ask a Case Manager” blog series.
June 26, 2017
Why I’m Grateful for My Parents' Approach to My CF
Why Little Moments Matter When It Comes to CF Care
Since Cystic Fibrosis Foundation Compass launched last year, our team of experienced case managers has fielded more than 5,000 requests for help from people with cystic fibrosis and their families as they navigate complex insurance, financial, legal, and other issues related to life with the disease. In an effort to continue expanding our assistance to the CF community, we are excited to unveil the new “Ask a Case Manager” blog series, where we will take questions from the CF community and publish answers written by the same Compass case managers that answer your calls and work one-on-one with you every day.
For our first post, we will be answering questions about health insurance, living expenses, and clinical trials:
“I have CF and have just been offered a job, which I've decided to take. But, I'm a bit confused about if I should enroll in coverage through my employer or stay on my parent's plan for now. Do you have any advice?" -- Keith, 25, California
Many people with CF are concerned about getting or keeping health insurance, and the
different types of plans can be confusing. The first step is to confirm that your employer's options provide enough coverage for your needs. Our
Benefit Assessment Checklist can help with this.
Since you will be “aging out” of your parent's plan when you turn 26, you will need to decide when to make the switch so you are not potentially facing two deductibles within the same year. There are many factors that affect the decision, such as the
open enrollment period offered by your employer and special enrollment period eligibility if you would like to stay on your parent's plan. A Compass case manager can provide you with a side-by-side plan comparison and give you information to help you decide. -- Hajin, Compass Case Manager
“Where can I get help paying for living expenses?” -- Keily, 31, Massachusetts
We have heard from many people in the community who are having trouble covering living expenses, such as rent or utilities. Fortunately, there are many programs offered by non-profit, government, and other private organizations to help with different living expenses. For example, we've found local programs that help people pay for food, car payments, home repairs, and much more. If you call Compass, a case manager can help you search for these organizations and walk you through the application process. We can also talk with you about other ideas that may help financially. -- Aaron, Compass Case Manager
“Is it possible to get supplemental insurance? My granddaughter has coverage under her dad's plan at work, but I wanted to see if we could get a second insurance to help cover costs.” -- Janice, 61, Kansas
Supplemental and secondary insurance plans are extra or additional insurances that can potentially assist with paying for services or out-of-pocket expenses that your primary insurance does not cover. The following are some secondary and supplemental insurance options to consider:
You should also make sure that the out-of-pocket costs not covered by your current coverage would be covered by your secondary insurance, and that the cost of the insurance is worth the benefits you'd receive. There may also be programs to help further reduce out-of-pocket costs for medications. As Hajin mentioned above, a Compass case manager can provide you with a side-by-side plan comparison and give you information to help decide whether supplemental insurance is right for your family. -- Heather, Compass Case Manager
“How do I sign up for any clinical trials?” -- Michelle, 34, Nevada
Participating in a clinical trial can be a rewarding and worthwhile experience. There are
clinical trials for therapies to treat the underlying cause of CF, as well as others that treat CF symptoms to improve quality of life.
You can find clinical trial options with our easy-to-use
Clinical Trials Finder. This tool allows you to choose your own criteria to identify open trials using factors such as your age, where you live, and how far you would consider traveling to participate in a trial. The Finder also allows you to identify where the trial is being conducted, including the state and the specific facility. Once you find a trial you're interested in, you'll be able to email each clinical trial's research coordinator for answers to questions you have about that study and see if you are eligible. -- Bruce, Compass Case Manager
If you are dealing with any of these or other issues, a Compass case manager can work with you to understand your options. Call us at 844-COMPASS (844-266-7277) Monday - Friday, 9 a.m. - 7 p.m. ET, or email us at
firstname.lastname@example.org. You can also
submit your own question for the next edition of Ask a Case Manager.
We look forward to continuing to help the CF community navigate their challenges to live full, productive lives.
Senior Director of Patient Access Programs, Cystic Fibrosis Foundation
As Senior Director of Patient Access Programs at the Cystic Fibrosis Foundation, Anne oversees CF Foundation Compass, a personalized service to help people with CF navigate complex insurance, financial, legal, and other issues. Before joining the Foundation, she spent a decade in oncology with a focus on advocating for and building programs to help people live with, through, and beyond a cancer diagnosis. She holds a master's degree in communication from Auburn University. Originally from Houston, Texas, Anne now lives in Hyattsville, Md., and enjoys traveling the globe with her husband.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site 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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