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.
I didn't always think that Teen Advocacy Day could make a difference. Turns out I was wrong.
June 30, 2017
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Teen Advocacy Day has been an incredible event in my life. I first attended when I was 13 years old, eventually going to Washington, D.C., a total of five times to advocate for people living with cystic fibrosis. My experience was the main inspiration for my decision to major in political science, participate in March on the Hill (the “adult” version of Teen Advocacy Day), and intern for the Cystic Fibrosis Foundation.
It's always inspiring to see all the new and old faces come back to Washington, D.C., to fight for their loved ones with CF. I leave with a renewed sense of hope for the future of our community, and an immense amount of pride knowing that what I and all of you did had such an impact on the lives of those with CF. But I didn't always feel that way.
As a teenager, I was cynical. I didn't think that a group of teenagers sharing their stories about CF could really affect legislation in a tangible way. I now realize how amazing Teen Advocacy Day is for myself and, more importantly, the CF community. In hindsight, this event helped me grow into the person I am today.
I can tell you with absolute certainty that our
advocacy on behalf of people with CF truly matters. I've found that although members of Congress are intelligent and compassionate, they tend to be unaware of what people with CF go through on a daily basis and how it affects every part of their lives. By sharing our stories, showing them pictures, and describing our loved ones' lives, we put a face to the disease and, just as importantly, help members of Congress understand the impact of the decisions they make when voting on legislation.
This impact will never be more important than it was at this year's Teen Advocacy Day. June 22 was the day that the Senate released the Better Care Reconciliation Act, its version of a bill to reform the American health care system. It also was the day that the CF Foundation had 81 teenagers and 162 volunteers storm the Hill to sit in 275 meetings with members of Congress.
The Foundation, along with many other patient organizations, vocally
opposed the Senate bill. If it were to pass, it would not protect our loved ones adequately and would derail so much of the progress that has been made toward adding tomorrows to those affected with CF. Being on the Hill and advocating against such potentially disastrous legislation provided a firsthand view into how Teen Advocacy Day and our community can make real waves in the policy world.
To me, influencing policy is what Teen Advocacy Day is all about. The event is much more than simply spending a few days in Washington; it's an opportunity for a group of smart, driven, mature, and unique individuals to rally around a shared cause and create a real, tangible difference in people's lives.
I'll be the first to admit that, like many teenagers, I was a know-it-all when I started participating in Teen Advocacy Day. Though I always did my best to deliver our important message to my members of Congress, I definitely had my doubts about whether what we were doing actually mattered.
When I hear from people who express similar doubts, I like to share the conversations I've had with people such as Rep. Brian Fitzpatrick (R-Pa.), whom I spoke to about the impact of advocacy during this year's event. I can tell you, both from his and my own experiences, that it is important to
share your CF story and let your elected leaders know what people with CF need to live full, happy lives.
If you have any reservations about jumping in and becoming an advocate for people with CF, please don't wait another day to get involved. Take it from someone who was once in your shoes: Your voice is immeasurably powerful. The CF community needs it now more than ever.
Sibling to a person with CF
Kevin has a younger brother, Owen, with cystic fibrosis. He has attended Teen Advocacy Day five times, and this year attended his first March on the Hill. Kevin worked this year as one of the Teen Advocacy Day interns for the Cystic Fibrosis Foundation in Bethesda, Md. He is a rising junior at Santa Clara University in northern California, where his passion for all things sports led him to a job helping run the intramural sports program. His passion for political science stems from his experiences as an advocate for the Foundation, which explains why he is double majoring in finance and political science.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
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