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.
Rima was diagnosed with cystic fibrosis around 4 months old. A graduate of Franklin Pierce University, she earned her bachelor's degree in environmental science. She is currently unable to work, so she is focusing on health full time. She received a double-lung transplant at the University of Minnesota Health in Minneapolis in May of 2017 and plans to move back to Colorado soon. Follow Rima and her sister, Laima, as they spread awareness about CF on Instagram at lung_story_short or on their blog, Lung Story Short. You can also follow Rima's personal Instagram account, rimasaurusrex.
Rob fell in love with a woman, Jennifer, who has cystic fibrosis. After many years with her and a bumpy ride through some lows and highs, including a bi-lateral lung transplant, he’s now beginning to understand CF a little bit and wants to be an advocate. He grew up in the small town of Byron, MN, where he and Jennifer live with their kids Abby, Rylie, and Wesley. He doesn’t have a blog but can be reached at firstname.lastname@example.org.
Robyn was diagnosed with cystic fibrosis at eight weeks old. Now 54, she enjoys her home in Ohio, surrounded by wooded trails and large rock formations. Having retired from teaching elementary school due to CF complications, Robyn's passions are social
justice work, helping her father who had Parkinson's disease, riding her Can-Am Spyder, and connecting with open-minded people. With the help of Trikafta, her bucket list is growing with new opportunities. She looks forward to sharing this new life
with her husband of 31 years, Mike, and daughter, Summer, 27. Find Robyn at email@example.com and on https://www.facebook.com/robyn.petras.
Rowan was diagnosed with cystic fibrosis at age 7. Today they live in Boston with their two turtles. Although they work as an architect, in their free time you’ll find Rowan either traveling abroad or playing games with friends. They are currently over
halfway to completing their goal of visiting all seven continents. Over the past 10 years, they have given talks to employees at different pharmaceutical companies and volunteered their time on different panels at Brigham and Women’s and Boston Children’s
hospitals. If you would like to see more of Rowan’s story, they post their travels on Instagram (@_rowanaway).
Rusalka was born in August 2016, and was bought by a young woman with cystic fibrosis, Kassandra, to become a service dog shortly after. Rusalka is currently therapeutically certified, and is working to get her full certification. In her spare time, she loves paddle boarding, hiking, swimming, and running around with her mom. You can follow Rusalka’s adventures on Instagram @rusalkathecorgi.
Sam is 23 years old and was diagnosed with cystic fibrosis at 5 and cystic fibrosis-related diabetes at 14. She received her bachelor's in anthropology and graduated magna cum laude despite constant health issues. These days, Sam is an amateur bodybuilder and works full time as a gym manager in Connecticut. Her introduction into the fitness industry was through writing hospital workouts for herself and fellow CF patients. Through complete dedication to her health and fitness, she went from being intubated with little hope of a future to having her highest lung function in a decade. You can follow Sam's story on Instagram @thatbungirl.
July 2019 -- We were deeply saddened to learn of Sam's passing. Sam opened her heart to the CF community through our blog. She will be missed by many.
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