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.
Anything that slows down progress in research and the cure for this cystic fibrosis is my sworn enemy. Learn why the Improving Access to Clinical Trials Act (IACT) matters for our progress in the fight against CF and what you can do about it.
Patty Burks, M.A., RN, CCRC
September 9, 2015
My Small War Against the Feeding Tube
“I Want to Be Paul Freeman When I Grow Up”
When I joined Washington University School of Medicine in St. Louis as a CF research coordinator in 2007, I quickly learned that recruiting patients into clinical trials was a major part of my job. I was amazed to find the number of people with CF who were eager to participate in clinical trials but were unable to because the money earned from participating would be counted as income, which would cause them to lose their eligibility for Supplemental Security Income (SSI) and Medicaid.
Some of these patients and families asked if they could participate without compensation, but it was determined it would be unethical to compensate some patients but not others. At the same time, it seemed wrong that these patients were unable to participate in research that could benefit their health simply because of their income level.
This all changed the day Improving Access to Clinical Trials Act of 2010 (IACT) became law.
With its implementation, the doors were opened for those with rare diseases like cystic fibrosis. This law allows people to earn up to $2,000 per year in compensation for participating in clinical trials without counting it as income against their eligibility for SSI and Medicaid.
Patients who previously would not have considered a trial for fear of losing vital benefits could now sign up to take part.
There is a group of children and adults with CF whose lives were forever altered because of the bill. As a result of the legislation, some were now able to join trials for disease modifying drugs and were given free access to the drug once the placebo trial was completed.
So as you can see, the bill is crucial to ensuring that patients of all economic levels can participate in clinical trials.
But it's set to expire on Oct. 5 -- unless Congress takes action and passes the Ensuring Access to Clinical Trials Act of 2015 (EACT), which would make this a permanent law.
Anything that speeds up progress in research and the cure for cystic fibrosis is something I want to be involved in, and I imagine you do, too.
Please contact your representative and ask that they support the Ensuring Access to Clinical Trials Act, HR 209/S 139.
Thanks for joining me in this fight to make research accessible to all people with CF.
Patty Burks, M.A., RN, CCRC
Director of Clinical Trial Affairs, Cystic Fibrosis Foundation
Prior to joining the CF Foundation, Patty served as a CF research coordinator at Washington University School of Medicine in St. Louis, Mo. There, she was part of the team responsible for running CF clinical trials and had the great joy of working with children and adults with CF. At the Foundation, Patty's work focuses on supporting clinical research teams across the country so they can continue to provide high-quality, timely conduct of clinical trials.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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