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.
Learn about the 2017 health insurance landscape and get tips on preparing for open enrollment from a CF Foundation Compass expert.
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Some of you may have received a notification from your current health insurance company about the changes expected in 2017 -- and it probably did not sound very pleasant.
Earlier this year, a few insurance companies publically announced that they were leaving the Health Insurance Marketplace due to losses in revenues in 2014 and 2015. All existing enrollees of those companies' plans will receive a notification stating that their current plans are no longer being offered as of 2017. The plans designed by Medicare-approved private insurance companies, such as the Medicare Advantage plan, may also send a notification of change each year.
In 2017, monthly premiums are expected to spike -- especially for the plans offered through the Health Insurance Marketplace. This may result in your monthly premium increasing by as much as 40 percent. Fortunately, health insurance companies are obligated to notify customers of any expected changes in advance.
In some states, the available health insurance plan choices will be very limited in 2017. Some states may have only one insurance company participating in the Health Insurance Marketplace, while even multiple companies may offer a very limited choice of health care providers and facilities by having only HMO network options available. This means that before enrolling in a new plan it is of the utmost importance to make sure that your CF care center and providers are considered in-network.
In addition, prescription coverage varies greatly based on your plan choice, so it's important to review the plan's drug formulary and how the plan is covering each of your medications. Each year, an increasing number of insurance companies are requiring prior authorizations for expensive medications and treatments, such as those for cystic fibrosis.
There is a limited time period in which people can enroll in a new health insurance plan or make changes on an existing plan, referred to as the Open Enrollment Period. State insurance plans, such as Medicaid or the Children's Health Insurance Plan (CHIP), are not subject to the Open Enrollment Period and anyone can enroll in a plan throughout the year. For employer group plans, there is a specific period set by your employer, and your plan administrator (such as your human resources department) can provide you with the dates. The Open Enrollment Period also applies to federally funded insurance plans such as Medicare, as well as private plans offered through the Health Insurance Marketplace or directly through an insurance company.
Watch the video “Health Insurance Marketplace 2017 Open Enrollment Preview” from the Alliance for Health Reform to learn more about these upcoming changes.
Here are the important dates to remember.
For Medicare plans:
For private insurance plans, including plans offered in the Health Insurance Marketplace:
CF is a challenging, time-consuming disease. We understand that there are many moving parts, and that understanding health insurance coverage requires extensive research and hours on the phone. CF Foundation Compass's 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 by email at firstname.lastname@example.org with your open enrollment questions.
Senior Case Manager, Cystic Fibrosis Foundation
Hajin is a senior case manager for Cystic Fibrosis Foundation Compass experienced in state health insurance, manufacturer patient assistance programs and non-profit foundation patient assistance programs. She has been with the Cystic Fibrosis Foundation for three years, and focuses on employee training, community outreach, content development for Compass and traveling to CF education day events to represent her team. Hajin can be reached at email@example.com 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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