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 May 12, 2015, an FDA advisory committee will meet to evaluate the safety and effectiveness of the ivacaftor/lumacaftor combination drug (Orkambi) and provide a recommendation to the FDA for or against approval.
Published on May 11, 2015
While the committee will make an important contribution to the FDA's decision-making processes, its recommendation is not binding. The FDA will make the final decision on the approval of the drug.
Orkambi is designed to treat the underlying cause of CF in people with two copies of the F508del mutation. Currently, the FDA is considering whether to recommend approval for people with CF ages 12 and older, representing 8,500 people or nearly a third of the CF population in the United States.
While nearly half of the CF population in the United States has two copies of F508del, the drug combination must first be tested in people ages 11 and under before it's considered as a treatment for this age group.
During the meeting, a panel of independent medical experts and community representatives will thoroughly evaluate the clinical trial data as well as hear testimony from CF researchers, clinicians and patients. The Foundation submitted a support letter to the committee in advance of the meeting, which can be found here.
People with CF who participated in the clinical trials will also testify on behalf of the drug and share first-hand accounts of how the drug has improved their health and quality of life.
The meeting is open to the public and will take place from 8:00 a.m. to 4:00 p.m. at the Hilton Washington, D.C. North in Gaithersburg, Maryland. A live webcast is available for $200. More information on the webcast can be found at: https://www.fdalive.com/webcast.cfm.
Orkambi was discovered and developed by Vertex Pharmaceuticals Inc. with significant clinical and financial support from the CF Foundation.
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