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.
The Cystic Fibrosis Foundation's tenth annual March on the Hill saw more than 80 volunteer advocates from 34 states convene in Washington, D.C. to speak with their members of Congress about cystic fibrosis and ways that elected officials can support the CF community and our search for a cure.
Published on March 17, 2016
One lucky advocate, Katrina Young and her son, Sean, who has CF, were even invited to the White House with Foundation President and CEO, Preston Campbell, M.D., to share their thoughts on the future of precision medicine.
On Feb. 25, volunteer advocates attended nearly 200 meetings with Congressional leaders and their staff members about the need for increased, consistent funding for the National Institutes of Health to support basic and translational science, which supports the research behind CF therapies. During these visits, they also discussed the need for robust funding for the Food and Drug Administration to make sure that drugs are reviewed swiftly for safety and effectiveness. In addition, advocates asked their representatives to join the
Congressional CF Caucus.
This two-day event kicked off on Feb. 24 with a training session for advocates about policy issues that are important to the CF community and about
how to tell their personal CF story. During a special reception, three Congressional members were honored with Legislative Champion Awards for their tireless work in helping to
pass the 2015 Ensuring Access to Clinical Trials Act and their overall support of the CF community.
The next morning, CF Foundation leadership met with the volunteers and held a panel to discuss recent advancements in cystic fibrosis treatments and the future of CF care. Before the advocates left for Capitol Hill, Dr. Campbell offered them some words of encouragement, saying, “Your story is the important story that legislators need to hear. And at the end of the day, you will feel great about what you've done.”
In addition to the advocates representing the CF community on the Hill, Dr. Campbell, longtime CF Foundation advocate and volunteer
Katrina Young and her son Sean were invited by the White House to attend the
Precision Medicine Initiative (PMI) Summit. They were given the chance to hear about the progress made in precision medicine since the launch of the initiative more than one year ago and participate in round table discussions on the future of this type of care.
“For a lack of a better word, it was the coolest day I ever had,” Katrina Young later shared with her fellow advocates. “Our story is part of the Precision Medicine Initiative and I was so proud to be there and represent the CF community.”
After all the Hill meetings concluded, the volunteers came together one last time for a special dinner to
reflect on their day and share their own personal CF stories with one another. “I am full of gratitude right now. I remember a few years ago seeing advocacy highlights online and I thought to myself, 'I want to do that,'” said Holly Bendz, whose 9-year-old daughter has CF. This year was her first time at March on the Hill.
Frank Spera, a grandfather of a 12-year-old with CF and first-time advocate, echoed Holly's sentiment and shared why he started advocating, “I wanted to turn my grief into action.”
For more information on how you can get involved in
CF Foundation advocacy initiatives, contact us at
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