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.
During this open enrollment period, you may receive calls from people trying to sell you insurance plans. Luckily, our dedicated and knowledgeable Compass case managers are available to help you research, explore and compare options.
November 21, 2016
What We're Thankful For
How I Talk to My Kids With CF About Life and Mortality
It's open enrollment time for 2017 health insurance, which means that now is the time you can select a new plan or make changes to your marketplace, private insurance, Medicaid and some employer plans.
Limited competition and higher premium rates are just some of the challenges during this enrollment season. It's possible that you may also receive calls from people trying to sell you insurance plans. The caller may try to convince you to make an immediate purchase, stating that if you pass on this opportunity, the price will increase.
As the purchaser, you have the option to purchase plans from the marketplace or directly from a health insurance carrier, an agent or a broker. But, be very careful when assessing your options.
As a case manager at Compass, I receive many calls from individuals with cystic fibrosis and their families asking for help in navigating the complexities of insurance coverage.
Earlier this week, Compass heard from a family of a child with CF. The mother of the child informed us that she received 14 calls in one day from a person who was trying to convince her to purchase an insurance plan. She was confused about her options, so she called Compass for help with the insurance broker on the line. The broker was attempting to sell her a plan with no deductible and a monthly premium that the mom was comfortable with. They insisted that she capitalize on the offered rate because it might change if she did not purchase immediately.
Even though the offer sounded great, the rush to purchase caused me to be a bit skeptical. In my role as a case manager, I questioned the broker about the structure of the plan based on the family's needs and quickly realized the plan had a lot of disadvantages.
Under the proposed plan, the family would be responsible for 60 percent of the medication cost, with the insurance plan covering the remaining 40 percent. Although supplemental programs such as copay assistance programs will help cover part of the 60 percent out-of-pocket cost, the family may still have to pay a significant amount beyond what these programs will help with. These types of insurance plans may benefit the patient in the short-term but will be more costly in the long-term.
By the end of the call, the mother was happy that I was able to help her by providing information specific to her family's needs.
Selecting the best insurance plan can be tricky. Many families and insurance companies have a hard time identifying the best plan based on a person's needs. Our dedicated and knowledgeable case managers can do the legwork for you and help you explore and compare options. Contact Compass at 844-COMPASS (844-266-7277) or email email@example.com for help with selecting or changing plans.
Case Manager, Cystic Fibrosis Foundation
Sharkara is a case manager for Cystic Fibrosis Foundation Compass, and has been with the Foundation since 2008. Sharkara is a graduate of the University of Georgia with a B.S. in Health Promotion & Behavior. Sharkara can be reached at firstname.lastname@example.org or 844-266-7277.
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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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