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.
One hundred fifty advocates, backed by more than 5,000 connections from an additional 1,600 cystic fibrosis advocates across the country rallied behind protections for people with pre-existing conditions, like CF, during the Cystic Fibrosis Foundation's 13th annual March on the Hill.
Published on March 12, 2019
On March 7, 150 advocates rallied together in Washington, D.C., to advocate for the cystic fibrosis community during March on the Hill. The 13th annual Foundation event allowed advocates to share their CF stories with lawmakers and ask for protections
for people with pre-existing conditions as well as robust funding for the National Institutes of Health (NIH) and the U.S. Food and Drug Administration (FDA).
An additional 1,600 advocates from around the country sent messages to their lawmakers during the Foundation’s second annual Online Day of Action. These advocates were led by Marissa Benchea and Rima Manomaitis, both adults with cystic fibrosis. Marissa is a longtime volunteer of the Foundation who received the Alex Award in 2014 for her continuous inspiration to others with the
disease. Rima, a frequent Foundation blog author, uses her blog, Lung Story
Short, to raise awareness about life with CF. Online messages to
lawmakers amplified the presence of the CF community on the Hill, while also
supporting the Foundation’s policy priorities.
In their more than 315 meetings with members of Congress, attendees educated elected officials about living with cystic fibrosis and advocated for:
During in-person trainings held on Wednesday prior to the Thursday March on the Hill event, participants also discussed the importance of advocating from home and creating a culture of advocacy that continues beyond lobbying days.
“Advocacy is as much a part of [our son’s] care plan as any medication,” said Jaci Strube, national advocacy co-chair for the Foundation. “Interacting with our legislators at home is where our connections have grown roots. Whether showing our care center
off, or the ability to have a longer meeting, in-district advocacy has been crucial to building relationships with our representatives.”
To stay informed about the Foundation's advocacy work and to get involved today, text “FIGHTCF” to 52886 or sign up for the
CF Foundation's Advocacy Alerts.
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