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 U.S. Food and Drug Administration has approved a device, called RELiZORB®, that helps break down beneficial fats in supplemental nutrition provided via G-tubes.
Published on December 2, 2015
UPDATE July 24, 2017: The U.S. Food and Drug Administration (FDA) approved the use of the RELiZORB® digestive enzyme cartridge for children ages 5 to 18 who use a feeding tube. The FDA initially approved use of the enzyme cartridge for tube feeding for people ages 18 and over.
Almost 90 percent of people with cystic fibrosis take pancreatic enzyme supplements to help them absorb essential vitamins and nutrients. People with CF who have difficulty maintaining a healthy weight often rely on supplemental nutrition through a special feeding tube, known as a gastronomy tube (or G-tube), to meet their nutritional needs.
The U.S. Food and Drug Administration has approved a device that helps break down beneficial fats in supplemental nutrition provided via G-tubes. The device, called RELiZORB®, is a cartridge containing digestive enzymes that is placed in line between the supplemental nutrients and the G-tube and allows for fats in the formula to be predigested.
The active ingredient in RELiZORB® is iLipase®, a combination of the digestive enzyme lipase attached to a polymeric carrier. As the tube feeding formula passes through the cartridge, it makes contact with the iLipase and the fat in the formula is broken down to its absorbable form. The iLipase remains in the cartridge and does not become part of what is ingested.
This approach simplifies the use of enzyme supplements for people with CF who have multiple needs, including those who require overnight tube feeding or are in intensive care units.
The device improves the absorption of beneficial fatty acids, including omega-3 fatty acids and other critically important “good fats.” Low levels of certain fatty acids contribute to inflammation, and inadequate absorption of fats can negatively affect an individual's ability to maintain or gain weight and absorb the nutrients necessary for overall health.
According to the CF Foundation's 2014 Patient Registry Annual Data Report, more than 11 percent of individuals with CF use supplemental tube feeding to get the nutrition they need. Registry data show that nutrition status and lung function are related, and improvements in body mass index (BMI) are associated with increased pulmonary function.
RELiZORB® was developed by Alcresta Inc., a specialty pharmaceutical company focused on enzyme-based products for gastrointestinal and rare diseases. In 2013, Cystic Fibrosis Foundation Therapeutics, Inc. committed $1.6 million to Alcresta to accelerate the development of the device. CFFT is the nonprofit drug discovery and development affiliate of the Cystic Fibrosis Foundation.
Learn more about cystic fibrosis and nutrition.
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