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.
Nonprofit commits $20 million to fund projects and accelerate genetic therapies for CF
Published on August 5, 2020
BETHESDA, Md. -- Today the Cystic Fibrosis Foundation announced a collaboration with Longwood Fund, a biotech-focused venture capital firm, to accelerate innovative therapies for cystic fibrosis. Together, Longwood and the CF Foundation are dedicating resources to advance projects with transformative potential and incentivize early stage companies to prioritize CF drug discovery and development. The Foundation has committed $20 million to the collaboration as part of its Path to a Cure.
“The Cystic Fibrosis Foundation has a legacy of making bold commitments, including early stage funding to develop breakthrough therapies for people with cystic fibrosis and to drive progress toward a cure,” said Michael P. Boyle, MD, President and CEO, Cystic Fibrosis Foundation. “This collaboration marks an exciting evolution in our long-standing approach to venture philanthropy and will amplify our efforts to draw the best scientific minds and technologies into CF and accelerate our Path to a Cure.”
Under the agreement, the Foundation has committed $20 million to a CF-focused incubator to accelerate development of CF programs in select Longwood Fund companies. Through the incubator, the Foundation will have the opportunity to provide seed-stage funding during a new company's formation within Longwood Fund's general fund, as well as continue support for those companies in future fundraising rounds with other investors. The Foundation is also a limited partner in Longwood Fund V, a diversified early stage biotech venture capital fund.
The incubator fund will be governed by an advisory committee co-led by William Skach, MD, Chief Scientific Officer of the CF Foundation; and Christoph Westphal, MD, PhD, Co-Founder and General Partner of Longwood Fund. Dr. Skach is one of the world's leading scientific experts in cystic fibrosis, and a specialist in protein folding. Dr. Westphal has been the co-founder, CEO, and lead investor of six biotechnology companies that have completed initial public offerings.
The relationship combines Longwood's track record of establishing successful companies around innovative technologies and the Foundation's extensive research infrastructure and unparalleled expertise in CF biology. Collectively, the Partners at Longwood Fund, which include General Partners Christoph Westphal, Rich Aldrich, and David Steinberg, have co-founded 18 companies, with nearly two dozen additional early-stage company investments. These companies have over 20 launched or marketed drugs and therapies, as well as over two dozen clinical stage assets, all focused on helping patients in need.
The CF Foundation is widely credited with pioneering the use of venture philanthropy in drug development. Its research funding model has helped de-risk and spur the development of new technologies in CF, and has resulted in more than 10 approved therapies -- including new medicines that treat the underlying cause of CF for many people with the disease.
This progress has added decades of life and new hope for people with CF, but critical work remains to ensure that every person with the disease has an effective therapy to address their underlying mutations. Approximately 7 percent of people with CF have mutations that will not respond to current treatments for the underlying cause of the disease. In 2019, the Foundation introduced its Path to a Cure, an ambitious research agenda and $500 million challenge to accelerate treatments for individuals who are still waiting for a breakthrough and cure CF for all people living with the disease.
The agreement with Longwood Fund builds on the Foundation's highly successful approach to collaborative drug discovery and development and positions the Foundation to take advantage of emerging science with the potential to benefit individuals with CF who are most in need of new therapeutic options.
The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis. The Foundation funds more CF research than any other organization, and nearly every CF drug available today was made possible because of Foundation support. Based in Bethesda, Md., the Foundation also supports and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease. The CF Foundation is a donor-supported nonprofit organization. For more information, visit cff.org.
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