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.
In the second installment of our “Ask a Case Manager” series, two more Compass case managers answer questions directly from the cystic fibrosis community about the challenges they're facing when it comes to accessing CF care.
December 7, 2017
The Matilija Poppy Club: Navigating the Loss of a Child With CF
Find Out What Therapies We Are Researching for People With Rare and Nonsense Mutations
After receiving great feedback from the cystic fibrosis community on the first post in our “Ask a Case Manager” blog series, we're excited to answer more questions from the community about your CF-related challenges.
As we near the end of the year, many people may need to select a new insurance plan or make changes to the one they already have. Here, Cystic Fibrosis Foundation Compass case managers give advice on what to consider when choosing a plan, as
well as free resources available to help the CF community navigate federal programs for people who are disabled.
"I have a 15-year-old son with CF. What should I look for when signing up for health insurance?" -- George, 50, Michigan
We often hear from people with CF and their families that picking an insurance plan can be difficult, and we know that understanding your health insurance options can be challenging.
When deciding to sign up for health coverage, you may have several options, such as employer-provided health insurance, private health
insurance, or a plan on the health insurance marketplace. There are specific times called open enrollment periods when you can sign up for these plans or make changes to coverage you already have.
A smooth transition from an existing plan to a new plan requires some planning to navigate your insurance options. Your plan will influence which doctors and hospitals are in-network,
which treatment plans and prescription drugs are covered, and your out-of-pocket costs, so knowing what your plan covers is important.
But before selecting a plan, you should consider your needs and the needs of your family. Some important questions to think about are:
When considering what your financial situation is, remember that the monthly premium is not the only expense you'll face next year. You'll also have to pay any out-of-pocket costs associated with your care. Because many people with
CF require frequent medical care, the plan with the lowest premium may not necessarily be the best one for you.
Choosing a plan on your own can be a daunting task, but our experienced Compass case managers are
here to help you find and compare your options so that you can choose the best one for you.
"What is the process of receiving disability benefits while retaining my life savings?" -- Vin, 41, New York
Many people with CF apply for Social Security Disability (SSDI) or Supplemental Security Income (SSI),
which are federal programs that help people who are disabled. The Social Security Administration (SSA) website lists the disability evaluation criteria for children and adults with CF.
The SSA sets strict guidelines to determine if an individual meets the disability eligibility requirements to receive benefits and sets rules to continue to receive those benefits. The application process can often be time-consuming and confusing, so
working with an experienced attorney can increase the chances of your application being approved.
The CF Foundation funds the CF Legal Information Hotline®, run by Sufian & Passamano, LLP. You can contact the hotline for general questions about Social Security benefits, including how to keep your savings while receiving disability benefits.
If you are interested in applying for Social Security benefits, the CF Foundation also funds the Social Security Project (SSP), which provides free assistance by Sufian & Passamano to help with getting and maintaining SSDI/SSI benefits.
You can contact Compass to be connected with either of these resources.
If you are dealing with any of these issues or need help with a CF-related challenge, 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.
Share this Post
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.
Follow Us On
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.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails