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.
On Friday, a federal judge issued a decision in Texas v. United States, finding the Affordable Care Act to be unconstitutional. This decision could ultimately leave people with pre-existing conditions, like cystic fibrosis, without patient protections while also jeopardizing access to adequate, affordable health care coverage.
Published on December 17, 2018
On Friday, a federal judge struck down the Affordable Care Act (ACA) as unconstitutional in Texas v. United States. The case, brought by 20 states, successfully challenged the constitutionality of the ACA after the repeal of the individual mandate in December 2017.
While the result is extremely disappointing, some states are appealing the ruling and the administration confirmed the law is still in place. This means that the health care law remains unchanged for now and people who purchased health care for 2019 from healthcare.gov will remain covered and the millions of Americans who have Medicaid coverage through expansion will also remain insured. The Cystic Fibrosis Foundation will be monitoring the case closely and continue to keep the community updated.
If the ruling were to go into effect, it would allow insurers to return to coverage and pricing practices that discriminate against people with pre-existing conditions. It would also lift the ban on annual and lifetime caps and eliminate the requirement that insurers in the individual market cover essential health benefits, such as hospitalizations and mental health services. If the ACA were to be overturned, employers would be allowed to return to the practice of implementing waiting periods, a given time period before health insurance covers services for a pre-existing condition. Another important at-risk provision of the ACA allows young people to stay on their parents' insurance until age 26.
“Our concern is how this ruling could ultimately impact people with cystic fibrosis and other pre-existing conditions,” said Mary Dwight, senior vice president of policy and advocacy at the CF Foundation. “We will continue to be vigilant and advocate for meaningful health insurance that supports the highly specialized care people with CF need to live longer and healthier lives.”
The ruling comes after the Department of Justice (DOJ)'s decision earlier this summer to not defend pre-existing condition protections in this case. Sixteen states and the District of Columbia intervened to defend the ACA, noting that invalidating key components of the act would threaten the health care of millions of Americans.
The Cystic Fibrosis Foundation joined 37 patient groups to speak out against the ruling.
Take action by telling members of Congress to restore critical protections for people with pre-exisiting conditions.
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