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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
By educating elected officials and other government decision makers on the needs of the cystic fibrosis community, the Cystic Fibrosis Foundation works to shape public policy to help our efforts to cure CF and provide all people with CF the opportunity to live full, productive lives.
On Dec. 8, 2015, the Cystic Fibrosis Foundation hosted a congressional briefing, Precision Medicine & Cystic Fibrosis: Using Genetics to Treat Disease, to educate members of Congress and their staff on the role of precision medicine and genetically targeted treatments and therapies.
The event included a panel discussion moderated by William R. Skach, M.D., senior vice president for research affairs at the CF Foundation. The panelists included Eric D. Green, M.D., Ph.D., director of the National Human Genome Research Institute (NHGRI) at the National Institutes of Health (NIH); Noreen Roth Henig, M.D., chief development officer of ProQR Therapeutics NV; and Mara Cray, a 19-year-old with CF.
The briefing was co-sponsored by the Congressional Cystic Fibrosis Caucus co-chairs, Representatives Tom Marino (R-Pa.) and Jim McGovern (D-Mass.).
To ensure the voices of the CF community are heard in Washington, the Cystic Fibrosis Foundation submits testimony, comments, and letters to Congress and federal agencies on health care policies that affect or have the potential to affect those with cystic fibrosis. Following are statements submitted by the Foundation that advocate for the CF community's interests in three areas: federal investment in cystic fibrosis research and drug review, the development and review of CF treatments, and health care reform.
Energy and Commerce Committee Chair Fred Upton (R-Mich.) and Representative Diana DeGette (D-Colo.) are spearheading the 21st Century Cures Initiative, an effort aimed at developing policies to accelerate the discovery, development, and delivery of treatments and biomedical innovation. Through this initiative, the Energy and Commerce Committee is soliciting input from industry, patients, researchers, government agencies, and other stakeholders about ways Congress can incentivize and accelerate the development of cures. The CF Foundation has provided expertise in a number of areas to help inform this effort.
The bipartisan Ensuring Access to Clinical Trials Act of 2015 makes permanent the Improving Access to Clinical Trials Act of 2009 (IACT), a law enacted in 2010 that allows patients with rare diseases to participate in and benefit from clinical trials without fear of losing vital benefits. Sponsored by Senators Ron Wyden (D-Ore.), Orrin Hatch (R-Utah), Sherrod Brown (D-Ohio), and Edward Markey (D-Mass.) as well as Representatives Lloyd Doggett (D-Texas), Tom Marino (R-Pa.), and Jim McGovern (D-Mass.), this bill will permanently allow patients with cystic fibrosis and other rare diseases to receive up to $2,000 in compensation for participating in clinical trials without that compensation counting toward their income eligibility limits for SSI and Medicaid. The Cystic Fibrosis Foundation actively supported the Improving Access to Clinical Trials Act when it was introduced and advanced in 2009, and we are working to ensure that the law continues to eliminate barriers to clinical trial participation for the CF community.
Read the Cystic Fibrosis Foundation's comments and proposals to the National Institutes of Health (NIH), Food and Drug Administration (FDA), and other related agencies on streamlining the drug development process to speed safe and effective therapies for those with cystic fibrosis.
View the Cystic Fibrosis Foundation's testimony, comments, and letters highlighting the need for access to sophisticated, specialized care and health coverage for people with cystic fibrosis.
In February 2013, the Social Security Administration (SSA) proposed changes to the criteria it uses to determine if a patient with cystic fibrosis is eligible for disability benefits. The CF Foundation is concerned that some of these changes could hinder access to disability benefits for CF patients. View below letters to the SSA from the Cystic Fibrosis Foundation, cystic fibrosis care center directors, and members of Congress expressing concern about the proposed changes.
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