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.
Connecticut and Texas Last to Join Others in Testing for Life-threatening Disease
Last updated on July 7, 2009
(Bethesda, Md.) -- The Cystic Fibrosis Foundation announced today that all 50
states, plus the District of Columbia, have passed legislation requiring that
all newborns be screened for cystic fibrosis by the year 2010.
diagnosis of cystic fibrosis, a life-threatening, genetic disease, can have a
dramatic impact on the health of those born with the condition.
screening for CF was adopted nationwide at a rapid pace, following the
aggressive advocacy efforts of the Cystic Fibrosis Foundation, its volunteers
and many local and national interest groups. In 2005, only five states required
that CF be included on the list of mandatory screening conditions.
years of debate, Texas and Connecticut -- the last two states without mandatory
newborn screening -- will now establish programs. Connecticut will begin
screening Oct. 1, 2009, and Texas is expected to start in December.
congratulate Texas and Connecticut for joining a nationwide effort to ensure
that every child born with cystic fibrosis gets the best possible start in
life,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis
Foundation. “Newborn screening is critically important for this disease because
early diagnosis is tied to better health. We extend our thanks to every
volunteer and advocate who fought to establish screening programs across the
Research shows that newborn screening for CF likely improves
and extends the lives of those born with the disease. Early diagnosis allows
affected infants to begin therapeutic interventions immediately. Early
treatment has been shown to improve height, weight, nutrition, cognitive and
lung functioning, and to reduce hospitalizations.
affects approximately 30,000 children and adults in the United States and
70,000 people worldwide. It causes thick mucus to build up in the lungs and
other organs, resulting in life-threatening infections and serious digestive
complications. More than 10 million Americans are symptomless carriers of a
cystic fibrosis gene. Most people who have a child with CF are not aware of a
family history of the disease.
When the Cystic Fibrosis Foundation was
created in 1955, few children lived to attend elementary school. Today, as a
result of dramatic improvements in research and care fueled by the Foundation,
the median age of survival for a person with CF is more than 37 years.
The Cystic Fibrosis Foundation is the leading
organization in the United States devoted to curing and controlling cystic
fibrosis. Headquartered in Bethesda, Md., the Foundation has more than 70
chapters and branch offices throughout the country, and supports and accredits
a nationwide network of over 110 care centers, which provide vital treatments
and other CF resources to patients and families.
Laurie Fink, director of media relations: 301-951-4422; email@example.com
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