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.
When the Cystic Fibrosis Foundation was established in 1955, people born with the disease weren't expected to live to attend elementary school. Today, because of our efforts, people with CF are living into their 30s, 40s, and beyond. Read about the incredible journey to cure cystic fibrosis.
Faced with insurmountable odds, but determined to save the lives of their children, a group of concerned parents came together to form the Cystic Fibrosis Foundation.
At the time, very little was known about cystic fibrosis, but the tenacity and strength of CF families laid the groundwork for monumental progress in research, care, and treatment of a rare disease.
Watch what some parents have to say about their children who have CF.
Today, because of their foresight and the hard work and dedication of thousands of families and volunteers across the country, the CF Foundation is the world's leader in the search for a cure for cystic fibrosis.
Since 1955, the CF Foundation has added decades to the lives of people with the disease. These gains are the direct result of advances in treatment and care made possible through our innovative business model, called venture philanthropy.
By raising funds needed to fuel CF-specific
drug development programs, we encourage pharmaceutical companies to invest in rare-disease research.
Virtually every approved CF drug available today was made possible with CF Foundation support.
Each new breakthrough is a building block that brings us closer to our ultimate goal: a cure for all people with CF.
philanthropy model has been covered by such prestigious publications as:
1955: The Cystic Fibrosis Foundation is formed by a group of concerned parents who are determined to save the lives of their children.
1961: The Foundation establishes an accredited
care center network by creating two centers devoted to treating CF.
1962: The median predicted age of survival is 10.
1965: Richard Weiss coins the term "65 Roses."
1966: The Cystic Fibrosis Foundation launches a
patient data registry that collects health information of patients seen at Foundation-accredited care centers.
1970: The median predicted age of survival is 16.
1978: The number of Foundation-accredited care centers totals more than 100.
1980: The median predicted age of survival is 18.
1983: Sports writer, novelist, and former CF Foundation Chair Emeritus Frank Deford pens Alex: The Life of a Child, a memoir chronicling his daughter's brave fight against cystic fibrosis, giving a public face to this rare disease.
1989: A team of Foundation-supported scientists discovers the defective cystic fibrosis transmembrane conductance regulator (CFTR) gene and its protein product years before the human genome is mapped. This discovery opens the door to understanding
the disease at its most basic level.
1989: The median predicted age of survival is 29.
Watch Francis Collins, who was part of the CFTR gene discovery team and is now the director of the National Institutes of Health (NIH), talk about the gene discovery 25 years later.
1993: The Food and Drug Administration (FDA) approves Pulmozyme®, which is proven to thin the tenacious, sticky mucus in the lungs and is the first drug developed specifically for CF. The time taken to develop Pulmozyme is less than
half of the industry average.
1997: The Foundation establishes the Therapeutics Development Program. The FDA approves TOBI®, the first aerosolized antibiotic designed for CF, which is proven to reduce hospital stays and improve lung function.
2000: The median predicted age of survival is 32.
2004: Foundation-supported studies in Australia and at the University of North Carolina show that hypertonic saline helps clear CF mucus. It is proven to improve lung function and reduce hospital stays, and becomes a therapeutic option.
2006: One of the first oral drugs to work at the cellular level and attack the root cause of CF enters clinical trials (VX-770).
CF Congressional Caucus is launched by Reps. Edward Markey (D-Mass.) and Cliff Stearns (R-Fla.), and remains one
of the largest congressional caucuses of its kind.
2007: The Foundation launches its first March on the Hill to help educate elected officials about the need for continued funding for the NIH, the FDA, and other drug development and research programs.
2008: During Phase 2 studies of oral compound, VX-770, trial participants show an increase in lung function and improvements in overall health and well being, proving that it is possible to treat the root cause of CF.
2010: The FDA approves a new inhaled antibiotic to treat CF lung infections. This new therapy is a much-needed alternative to antibiotics for CF patients who battle recurrent infections and develop resistance to existing antibiotics.
2010: The Foundation raises $175 million through the Milestones campaign -- a goal that fundraising industry advisers said would be impossible for a health care nonprofit to reach.
2011: Phase 3 clinical trials of ivacaftor (formerly VX-770) show profound results. Those receiving the drug demonstrate the highest increase on a lung function test seen in any clinical trial of a CF drug. A New Drug Application is submitted to
the FDA for ivacaftor under the trade name Kalydeco®.
FDA approves ivacaftor (Kalydeco®)
for a small group of people with CF ages 6 and older. The drug is the first to address the underlying cause of CF and opens exciting new doors to research and development that may lead to a cure for all people living with the disease.
2013: Two large international Phase 3 trials of ivacaftor, in combination with lumacaftor (formerly VX-809) in people with two copies of the most common CF mutation, begin.
2013: The Metropolitan Washington, D.C. Chapter's Breath of Life Gala raises $3.3 million, marking the single largest night of fundraising in the Foundation's history.
2014: The FDA approves ivacaftor as a single therapy to treat people ages 6 and older with one of eight rare CF mutations in addition to G551D.
2015: The FDA approves the lumacaftor/ivacaftor (Orkambi®) combination drug for people ages 12 and older who have two copies of the most common CF mutation, F508del -- representing about a third of those with CF in the United States.
2016: The FDA approves the lumacaftor/ivacaftor for children with CF ages 6 to 11 who have two copies of the F508del mutation. The decision means that about 2,400 additional children in the U.S. are eligible to receive the drug, bringing the total
number of those eligible for the treatment in the U.S. to nearly 11,000.
2017: Two Phase 3 clinical trials of tezacaftor (VX-661) in combination with ivacaftor demonstrate positive results not only for people with two copies of the F508del mutation, but also for those who have one F508del mutation and a second mutation that results in residual function.
2017: The FDA expands the use of ivacaftor to people ages 2 and older who have at least one of 23 residual function mutations in the CFTR gene. The FDA's consideration of laboratory evidence coupled with clinical data to address the needs of people with CF who have less common mutations is an important step forward for the CF community.
The FDA approves tezacaftor/ivacaftor (Symdeko®) combination therapy for people
with CF ages 12 and older who have two copies of the F508del mutation,
providing another option for people in this population, particularly
individuals who cannot tolerate lumacaftor/ivacaftor (Orkambi®). In addition,
tezacaftor/ivacaftor is approved for individuals who have a single copy of one
of 26 specified mutations – regardless of their other mutation.
The FDA expands the use of lumacaftor/ivacaftor (Orkambi®) to children with CF
ages 2 to 5 who have two copies of the F508del mutation. The decision means
that about 1,300 additional children in the U.S. are eligible to receive the drug.
Two Phase 3 clinical trials of elexacaftor (VX-445) in combination with
tezacaftor/ivacaftor (Symdeko®) demonstrate dramatic improvements in key
measures of the disease for people with one or two copies of the F508del
mutation. Importantly, clinical trial participants with two copies of F508del experience
a 10 percent increase in lung function compared to treatment with the modulator
tezacaftor/ivacaftor (Symdeko®) alone, indicating that the new triple
combination therapy has the potential to be significantly more effective than
previous two-drug combinations.
The FDA approves the use of ivacaftor (Kalydeco®) for babies with CF as young
as 6 months old who have certain mutations. Clinical trial data indicate that
starting on modulators at a young age has the potential to help slow or even
prevent progression of the disease.
The FDA approves the use of tezacaftor/ivacaftor (Symdeko®) for children with
CF ages 6 to 11 who have two copies of the F508del mutation or a single copy of
one of 26 specified mutations. The expansion means that an additional 2,000
children now qualify for the drug.
The FDA approves the triple-combination modulator
elexacaftor/tezacaftor/ivacaftor (Trikafta™) for people with CF ages 12 and
older who have at least one copy of the F508del mutation, regardless of their
other mutation. This historic breakthrough means that for the first time the
majority of the CF population could eventually have a highly effective therapy
for the underlying cause of their disease.
The Foundation maintains a robust pipeline of potential therapies that target
the disease from every angle. The more drugs in the pipeline, the greater the
odds of producing successful therapies and a cure for all people with CF.
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