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.
We're working diligently with state and federal government officials to shape public policy that will help all people with CF live long, fulfilling lives. Highlighted below are some examples of our advocacy work.
Increased Funding for Critical Federal Agencies in 2016
On December 18, 2015, a final year-end spending and tax agreement for Fiscal Year 2016 was signed into law to provide federal funding for critical government agencies through September 2016. The Foundation is pleased that this budget includes an additional $2 billion for the National Institutes of Health (NIH), which is a 7% budget increase over Fiscal Year 2015. The legislation also includes full funding for the President Obama's Precision Medicine Initiative. The Food and Drug Administration (FDA) also received a budget increase of $132 million, which is a 5% increase over Fiscal Year 2015.
In 2015, volunteer advocates across the country held hundreds of meetings with elected officials and sent more than 8,800 messages to members of Congress asking them to support robust funding for the NIH and FDA. Funding for basic and translational research and resources for an efficient drug approval process are critical in the search for a cure for CF, and we are excited to see these increases for the coming year. We will continue to advocate for robust resources for these critical agencies in the future.
Ensuring Access to Clinical Trials Act of 2015 Becomes Law
On October 7, 2015, the Ensuring Access to Clinical Trials Act of 2015 (EACT) was signed into law. Championed by Senators Ron Wyden (D-Ore.), Orrin Hatch (R-UT), Sherrod Brown (D-OH) and Edward Markey (D-MA), as well as Representatives Lloyd Doggett (D-TX), Tom Marino (R-PA) and Jim McGovern (D-MA), this new law makes the Improving Access to Clinical Trials Act of 2009 (IACT) permanent. This law allows individuals with rare diseases to participate in, and benefit from, clinical trials without the compensation from these trials interfering with their eligibility for Supplemental Security Income (SSI) or Medicaid.
The Cystic Fibrosis Foundation was a leading supporter of this legislation, as well as the original IACT law in 2009, and we are thrilled that this barrier to clinical trial participation for those with CF has been eliminated. View the links below to learn more about the Foundation's work in passing the Ensuring Access to Clinical Trials Act:
State of the Union Address
In the 2015 State of the Union address, President Barack Obama held up cystic fibrosis as a model for the introduction of his
Precision Medicine Initiative. This White House effort will increase funding and support for research that could lead to treatments that target an individual's personal genetic makeup, such as ivacaftor (Kalydeco®) and lumacaftor/ivacaftor (Orkambi®).
"I want the country that eliminated polio and mapped the human genome to lead a new era of medicine: one that delivers the right treatment at the right time," said President Obama. "In some patients with cystic fibrosis, this approach has reversed a disease once thought unstoppable."
The mention of cystic fibrosis in the State of the Union address was an important recognition of the progress that has been made in changing the course of this life-threatening disease. It also underscores the work that has yet to be done in finding a lifetime cure for all people with CF.
Bill Elder Jr., a medical student with cystic fibrosis and a longtime advocate, was invited to sit with first lady Michelle Obama at the State of the Union address.
President's Speech at the Launch of the Precision Medicine Initiative
launch of the Precision Medicine Initiative in January 2015, President Obama highlighted the success and advancements made in cystic fibrosis research as an example of the incredible potential of precision medicine. The president shared the story of Bill Elder Jr., a third year medical student with cystic fibrosis and his life-changing experience of beginning treatment with Kalydeco®.
"One day, Bill will be able to tell his grandchildren about how he used the miracle of his own life to not only serve as an example but also an inspiration," said President Obama. "And that's the spirit of hope and resilience and community that has always carried America forward."
Watch the president's speech:
White House "Champions of Change" Ceremony
On July 8, 2015, Emily Kramer-Golinkoff, an adult with CF, was honored at the White House as a "Champion of Change" for her advocacy work surrounding precision medicine. Along with eight other champions, Emily participated in a day of panels, meetings and speeches all focused on the idea that medicine can be targeted to a specific person's genetics and lifestyle. Emily shared the work that she is doing to harness the power of data to better treat disease and improve health for those with CF.
To learn more, read our
covering the event.
In 2015, the CF Foundation partnered with CF care center providers and patient advocates in more than 35 states to ensure that state programs, such as Medicaid, continue to include positive insurance coverage policies for CF therapies and care. In many instances, CF advocates spoke directly with decision makers and lawmakers about the complexities of living with CF and the importance of access to CF treatments. After one such meeting, one state's Medicaid director said "I appreciate the great relationship we have with you and your organization. [The] meeting was extremely educational for me."
The Foundation also actively engaged in state legislation that affected health programs critical to ensuring access to high-quality specialized CF care. An example of these efforts is the Foundation's partnership with CF advocates in Ohio to protect a "spend down" program that would ensure Medicaid eligibility for people with high medical costs. In California, the Foundation and other organizations collectively prevented the state from transitioning a children's special needs program into a managed care system that could limit access to CF treatments and care centers.
CF Foundation grassroots volunteers -- with guidance from chapter and national staff -- ensure that the voice of the CF community is heard by decision makers at all levels of government. We are grateful for the advocacy efforts of volunteers and celebrate our many successes in 2015.
Across the country, CF advocates met with elected officials to educate policy makers about the disease and unique needs of people with CF and their families. In 2015, CF advocates held more than 500 in-person meetings and sent more than 42,000 messages to their legislators, asking them to support initiatives vital to the CF community. Topics covered include:
During the Foundation's two annual lobby days,
March on the Hill and
Teen Advocacy Day, members of the CF community spoke with legislators about their experiences with the disease. Advocates also asked members of Congress to pass the
Ensuring Access to Clinical Trials Act
of 2015 to increase funding for the NIH and the FDA to further CF research and help streamline the approval of drugs in the
Foundation's drug development pipeline.
2015 marked the ninth annual March on the Hill and the seventh annual Teen Advocacy Day. Since the inception of these programs, volunteer advocates have held more than 2,000 meetings with members of Congress.
Additionally, the Foundation also held state advocacy days in two states. CF advocates met with their state legislators to raise awareness and ensure those with CF have access to quality, specialized CF care and treatments.
In February, the Foundation's New York Chapters hosted the premiere New York Advocacy Day. Despite a snowstorm, advocates were still on hand to meet with legislators and held discussions that ultimately helped protect state budget funding for a program assisting adults with cystic fibrosis. In June, the Massachusetts CF chapter hosted the sixth annual Massachusetts Advocacy Day.
To find out how you can get involved in CF grassroots advocacy, contact your local chapter or email us at
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