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 never realized how important it was to share my family's story of cystic fibrosis until I started participating in Teen Advocacy Day. This experience helped me find my voice.
June 14, 2017
Using My Voice to Help Improve Lung Transplantation
Why My Wife and I Choose Laughter When It Comes to CF
“Why does a physical therapist come to your house to treat your brothers?” I remember hearing that question from my friends as a little girl.
“They have cystic fibrosis,” I would explain. “It's a disease that affects their lungs, so they need therapy.”
As families of people with CF know, explaining the disease and its impacts are a part of our daily lives. We may not realize, however, how important it is that we share our story.
In June 2010, I turned 12. Less than one month later, I attended my first meetings with the U.S. senators and representatives who represented Massachusetts as a part of the Cystic Fibrosis Foundation's Teen Advocacy Day.
Naturally, I was nervous at these first meetings, but I soon realized that talking to a member of Congress about my experiences with CF was no different than explaining it to one of my friends. In my meetings, I shared my story and my connection to CF, explained how CF affects my brothers, and discussed what Congress could do to better their lives.
Every year that followed, I looked forward to June when I would return to Capitol Hill for more meetings. As the years went on, I became more comfortable in my meetings and -- when I returned home -- I was eager to go back.
My trip to Washington, D.C., for Teen Advocacy Day quickly became my favorite week of the year. I loved seeing the impact of my CF story as we continued to share our experiences and influence legislation. Additionally, I found a great sense of comfort in the support system I had when I was surrounded by other teens who understood what it was like to be part of a CF family.
After five years of attending as a volunteer advocate, I will be returning this year as a Teen Advocacy Day intern. I can't wait!
Each year, Teen Advocacy Day has different policy priorities that we discuss with our members of Congress on behalf of the CF community. This year, we will be discussing:
Having seen firsthand what quality health care means to people living with CF, we'll be giving our members of Congress our unique perspective on why people with CF and other chronic diseases need to be considered in any reforms. I am proud to give a voice to my brothers and the other members of the CF community.
To those who are thinking about participating in CF advocacy, I say, do it! Leave your comfort zone and take the opportunity to educate your representatives about things that they can do to improve your loved one's lives.
Teen Advocacy Day has helped me find my voice. I urge all CF family members to find theirs as well, because our voices can make big changes for our community and our country.
See you at Teen Advocacy Day!
Sibling to two brothers with CF
Michaela is a sister to two brothers, Justin and Ross, who have cystic fibrosis. She has been a teen advocate for five years and a March-on-the-Hill participant for two years. This year, Michaela worked as a public policy intern for the Cystic Fibrosis Foundation in Bethesda, Md., and is studying biochemistry at The George Washington University (GW) in Washington, D.C. She hopes to earn a doctorate in pharmacy. Fun fact: Michaela became interested in GW after passing through it every year on her way to advocate on Capitol Hill.
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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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