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.
Our goal is to educate policy makers about the needs of people with cystic fibrosis so that they make smart decisions about CF-related research, treatment, and access to care.
We recognize the value of tapping into the expertise that only people with CF and their families have. We invite you to share insights to help improve and develop programs and services that support the daily lives of people with CF.
Our mission is to find a cure for cystic fibrosis and improve the quality of life for those living with the disease. We can't do it alone. Help us add tomorrows by giving today.
In addition to working for a cure, the CF Foundation supports programs and policies to improve the lives of people with CF. Help us by raising awareness of CF, participating in a fundraising event, or volunteering with your local chapter.
It is important to understand that having a lung transplant involves substantial costs before, during and after the transplant. Your health insurance will cover many of the costs, but not all of them, and you will be responsible for co-pays.
Some examples of costs for which you will assume all or partial responsibility include:1
Members of the transplant team, such as the center's financial coordinator and social worker, can work with you to develop a plan to pay for all of the transplant-related expenses, including and especially those not covered by your insurance program. Here is a list of important questions to ask your center's financial coordinator.
Most health insurance and government programs, including most Medicaid policies, will pay for a lung transplant.
If you have Medicare or Medicaid, contact your insurance representative to find out what your policy will cover. More information about Medicare and transplant coverage is available here. Medicaid coverage policies differ by state. For more information about your policy, see the Medicaid website, and choose your state.
If you have a private insurance policy, such as one through your job or a family member's job, contact the company to find out if there are any limitations to your coverage or specific requirements related to transplant. Review a list of important questions to ask your insurance company.
Your financial coordinator or social worker may be able to put you in touch with nonprofit groups that provide financial assistance to transplant recipients. Many such organizations are listed in this Financial Resources Directory available from United Network for Organ Sharing (UNOS).
Some cystic fibrosis-specific charities are not included in that list. Contact Cystic Fibrosis Foundation Compass, to learn more about financial assistance programs to help you afford a transplant. Compass is a personalized service that can help you with insurance, financial, legal, and other issues. You can contact Compass at:
Monday - Friday, 9 a.m. - 7 p.m. ETcompass@cff.org
Although most insurance companies will cover the cost of the transplant itself, transportation to and from your transplant center, relocation costs and many other hidden expenses can quickly add up and make it difficult for many people with cystic fibrosis and their families to afford a transplant on their own. Organizations such as The Children's Organ Transplant Association (COTA), which also helps adults, can help you or your loved one deal with these extensive costs by organizing fundraisers, reaching out to local communities and generating support to help cover transplant-related expenses. This can help eliminate many of the financial barriers standing between you and the lifesaving transplant you need.
Another option is to raise funds yourself to help pay for transplant-related expenses. There are organizations that help transplant patients establish personal websites to raise funds. Your financial coordinator or social worker can help you identify an organization that is appropriate for you. A list of important questions to ask when choosing a fundraising organization is available from UNOS.
You also may be eligible for Social Security Disability, which will provide a monthly income. Ask a Compass case manager, your financial advisor, or your social worker for more information about applying for Social Security Disability.
1. U.S. Department of Health and Human Services: Organ Transplantation - The Process
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