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.
A diverse group of talented academic investigators leads the cystic fibrosis research community. The Cystic Fibrosis Foundation is pleased to support these investigators through a variety of opportunities.
Clinical investigators are at the core of our progress toward improving the lives of people with cystic fibrosis through clinical and translational research. Clinical investigators advise the Cystic Fibrosis Foundation and the Therapeutics Development Network (TDN) by participating on committees, guiding clinical trials as principal investigators or consultants, leading and serving their local Therapeutics Development Centers,
and serving as CF advocates around the world.
The CF Foundation is pleased to continue a long history of supporting investigators through career development and training programs, research funding, and national service or leadership opportunities. We are committed to maintaining and broadening this
support to ensure that a qualified pipeline of physicians and physician-scientists can continue to make important advances in CF research.
The figure below incorporates many of the Foundation's programs, which begin during specialty training and continue throughout an investigator's career. Those considering or already engaged in an academic career in CF are encouraged to explore these and
other programs to help identify service and leadership opportunities or funding mechanisms that align with their professional goals.
Many of these programs are applicable to investigators from a variety of medical subspecialties (e.g., pulmonology, gastroenterology, endocrinology, nephrology, lung transplant surgery, etc.).
Additional details and policies for most of these programs can be found in Awards and Grants.
If you need more information or have questions about any of the following CF Foundation programs and funding opportunities, please email the Grants and Contracts office at email@example.com.
Through the Clinical Research Scholars Program (CRSP) Award, a select group of promising early and mid-career investigators
are provided protected time to engage with the TDN Coordinating Center in Seattle, where they receive focused training and mentoring
in CF multi-center clinical research. This three-year program helps to develop the scholar's individual clinical research project while ensuring a larger pool of qualified investigators for the future.
Structured training and mentoring include biannual meetings at the TDN Coordinating Center, plus monthly conference calls with mentoring teams from the center's leadership to help supplement the local resources of CRSP participants.
Industry sponsors for research trials conducted within the TDN are expected to identify an academic investigator as the overall study principal investigator (PI). The CF Foundation and TDN Coordinating Center strongly encourage these industry sponsors
to include a mentored PI to work with and learn from the study PI. This arrangement improves study design, communication with sites, and dissemination of trial results. It also provides important career opportunities for both senior and mid-career
investigators, while helping to ensure a larger pool of qualified study PIs for future studies. When necessary, the TDN Coordinating Center can work with sponsors to identify either a study PI or mentored PI who is well-matched for a trial.
TDN investigators may need a letter of support from TDN leadership when they are being considered for academic promotion or other career opportunities. Investigators can directly request a letter of support highlighting their contributions within the
TDN by logging into CFCRNet and searching for “letter of support” to download and complete the form.
The Foundation's Data Safety Monitoring Board (DSMB) plays a vital role in promoting the safety and integrity of studies conducted within
the TDN. Junior members selected to participate will receive training and an opportunity to serve on a study Data Monitoring Committee in partnership with experienced committee members. Those interested in learning more about this opportunity should
email Lynne Quittell, M.D., co-director of the Foundation's DSMB, at firstname.lastname@example.org.
The Foundation and TDN Coordinating Center hold a meeting at the North American Cystic Fibrosis Conference (NACFC) for current recipients of the Harry Shwachman Clinical Investigator and LeRoy Matthews Physician-Scientist awards. Established CF investigators and a select group of prior award recipients
participate in this meeting to offer advice and answer questions regarding academic career development. During this time, awardees also have an opportunity to identify and network with colleagues.
The Foundation and TDN Coordinating Center recognize the fundamental role of academic investigators in CF clinical research. Please watch for new initiatives to support academic careers, and email the TDN Coordinating Center at email@example.com with suggestions or questions related to this area of our mission.
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