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 July 8, the White House honored 30-year-old Emily Kramer-Golinkoff as a “Champion of Change” for her role in advocating for the integration of precision medicine into the U.S. healthcare system.
Published on July 10, 2015
Through the Champions of Change program, the White House honors individuals who are doing extraordinary work to empower and inspire members of their communities. The Champions of Change honored on July 8 are advocates who are working to harness the power of data to better treat diseases and improve health.
Emily was just six weeks old when she was diagnosed with cystic fibrosis in 1985. At that time the average life expectancy of a CF patient was mid-to-late 20s. Today, in her role as a CF advocate, Emily has appeared in countless interviews and articles, and has published numerous pieces on her experiences living with a life-threatening disease. Through her non-profit organization Emily’s Entourage, she has raised over $1.5 million for research into rare nonsense mutations of CF.
Earlier this year, the Obama Administration launched the Precision Medicine Initiative, which was created in order to usher in a new model of specialized health care that focuses on individualized treatment and prevention. The goal is to stop applying health care treatments as a “one-size-fits-all-approach.”
During the launch event for the Precision Medicine Initiative in late January, President Obama specifically spoke about the role of targeted healthcare in providing effective treatments for people with cystic fibrosis. Bill Elder Jr., a person with CF who takes Kalydeco and guest of the first lady at the 2015 State of the Union Address, was singled out by the President as “living proof” of the power of precision medicine. During the Champions of Change panel session, Emily referred to precision medicine as the hope for her future.
"I am so honored to have been chosen as a Champion of Change for precision medicine,” Emily said. “Precision medicine has led to incredible advances in this arena for people with cystic fibrosis, including the approval of Orkambi just last week. I am deeply committed to extending these benefits to everyone with CF, including those with nonsense mutations like mine. This initiative gives me so much hope!"
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