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.
With several successes for the cystic fibrosis community over the past several months, advocacy is as important as ever to preserving our progress and working toward a cure.
Mary B. Dwight
August 4, 2017
Making the Hospital More Hospitable
I Can’t Fix CF, But I Can Make a Difference for My Son
Over the past few months, the cystic fibrosis community has seen some significant progress in our work to ensure that everyone with the disease can get the quality, specialized care they need.
The U.S. Food and Drug Administration (FDA) recently expanded the label of ivacaftor for people with cystic fibrosis who have one of
five splicing mutations and for people with one of
23 CFTR mutations, potentially affecting about 1,500 people in our community. Last month,
we also learned about the
positive early study results for the next generation of CFTR modulators.
These advances are filling our community with hope. But we also need to ensure that all people with CF have health insurance so they can access these types of therapies and other treatments that address the chronic symptoms of the disease.
Our advocacy work is about protecting that hope, and last week we saw the impact our efforts can have. After months of debate, the Senate voted to defeat several bills that would have jeopardized access to health care. Over the course of several days,
the Senate voted on -- and defeated -- efforts to dramatically cut funding to Medicaid, remove protections against annual and lifetime coverage caps, open the door to bringing back high-risk pools for people with pre-existing conditions, and undermine
the stability of the health insurance marketplace, among many other proposals.
All of these plans failed to protect adequate, affordable insurance. In response, CF advocates from across the country made their voices heard. Together, we called, emailed, tweeted, met with members of Congress, attended town hall meetings, and wrote
editorials. Our community made sure Congress knew what was important and reminded them of the people at the heart of their decisions.
To see the impact our voices had in this debate, look no further than the state of Maine. At a 4th of July parade, Senator Susan Collins, one of the deciding votes that defeated the Senate's efforts,
spoke with a woman whose grandson has CF.
She was concerned that her grandson would not be able to get health insurance because of his preexisting condition. Senator Collins has said in interviews that encounter, more than any other, hit home for her. It reinforced her belief that health care
“really cuts across party lines” and directly impacts people of all political stripes.
I'm also reminded of Patrick Kilbaine, an advocate from Ohio who has a young daughter with CF. In an
editorial published in the Cleveland Plain Dealer, he wrote “I am concerned about [my daughter's] future
medical coverage and worried about her future care. I hope the people who represent my daughter realize the changes they propose could affect how long my daughter lives. It is critical for the new administration to support efforts to have access to
life-saving drugs while working on reducing the cost, and maintaining coverage for pre-existing conditions in the new health care law.”
I'm inspired by people like
Michaela Myerson, who came to Washington, D.C. from Massachusetts for Teen Advocacy Day on behalf of her two brothers
with CF. Michaela helped train 81 teens from around the country along with their parents and guardians to tell their stories and advocate on behalf of their loved ones with CF.
These are just three examples of the countless people who spoke up, told their story, and helped make a difference for people with CF.
Our collective voices are loud and together we can influence policy and legislation that is important to our community. Your personal stories are the single most powerful weapon we have in advocacy. By sharing your experiences, we can help elected leaders
understand how the disease impacts people with cystic fibrosis and their families and
what we need from health insurance to get the specialized care a disease like CF requires.
The recent advancements in CF treatments and care have given many people in the CF community hope for living longer, healthier lives. But we need to keep advocating to ensure that people with CF can get the care they need at an affordable price.
That's why we need to keep the pressure on Congress. We need to roll up our sleeves and keep making calls, sending letters, and talking face-to-face with our members of Congress to make sure our needs are protected and our elected leaders know what people
with CF need to stay healthy.
We don't know yet how Congress and the administration will move forward, but we should all take a moment to appreciate the incredible impact that the CF community had in this debate. Your voice matters, and together we can continue to protect access to
high-quality, specialized care.
Mary B. Dwight
Senior Vice President of Policy and Advocacy, Cystic Fibrosis Foundation
As senior vice president for policy and patient programs, Mary directs the Foundation’s public policy agenda and efforts to support people living with CF. She is a catalyst for accelerating efforts to remove barriers to clinical drug development and also leads the strategic development of the Foundation’s efforts to enable and expand access to CF care.
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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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