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.
The CF Foundation applauds the Social Security Administration's updated eligibility requirements for disability benefits for people with respiratory diseases, including people with CF.
Today, the Social Security Administration (SSA) published updated eligibility requirements for disability benefits for people with respiratory diseases, including people with cystic fibrosis.
The eligibility criteria were expanded and updated to better reflect the needs of people with CF. The requirements took into consideration updated FEV1 criteria, a wider range of CF complications and expanded eligibility for those who receive lung transplants. Additionally, the eligibility rules allow for treatments for exacerbations wherever deemed most appropriate.
The new requirements will take effect on October 7, 2016.
The CF Foundation recognizes the new requirements as a significant step forward in ensuring that people with CF who cannot work will receive the disability benefits that they need.
Today's news represents an enormous win for people with CF and their families and would not have been possible without the hard work and dedication of the CF community.
In 2013, the Foundation spearheaded an effort to ensure that the proposed SSA eligibility requirements did not unfairly block people with CF from qualifying for disability benefits. In addition to submitting comments to the SSA during the editing process, the Foundation also mobilized its care center network and sent a letter signed by 128 care center directors to the SSA on this issue.
At the time, the Congressional CF Caucus co-chairs Representatives Edward Markey (D-MA) and Tom Marino (R-PA), Senator Michael Bennet (D-CO) and 37 other key members of Congress also sent letters to the Social Security Administration (SSA) and expressed their concern about the proposed changes that could have made it more difficult for people with CF to receive disability benefits.
Thanks to all of these efforts, the SSA eligibility criteria announced today are more appropriate for the needs of the CF community. We are grateful to the Social Security Administration for their willingness to listen to our concerns and integrate them into the final criteria.
For assistance with social security benefits, people with CF and their families can contact Compass, the Foundation's patient assistance program, at (844) 266-7277 or by email at firstname.lastname@example.org.
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