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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
Published on January 30, 2013
This feature focuses on a special person or
team who played an integral role in the 2012 Great Strides walks. We hope you'll
find this story to be inspiring as we continue to make Great Strides in our
efforts to find a cure for CF!
NY, walk held June 3, 2012Chapter: Greater
New York Chapter Team: Matthew's Warriors led by
Robert Corti, whose grandson Matthew, 2, has CF.Impact:
Raised nearly $110,000
Why I Walk
Corti, pictured holding his grandson, Matthew, 2, who has CF, says he's at war
with the disease. He dreams of a day when every person with cystic fibrosis can
live a full, meaningful life.
can't be a scientist finding a cure, so this is what I have to do - raise the
money to fund the science. It's what we all have to do. We don't have a
We're doing this not just for our kids, but for all kids with CF.
Even if Matthew was blessed to be one of the 4 percent on Kalydeco™, I'd still
be doing this walk. We're at war with this disease.
I am so grateful to all of the people who have
contributed to this cause. When I first started fundraising, I had no idea how I
was going to raise so much money. The thought of picking up the phone and asking
for money terrified me, so I decided to send emails instead.
hour of the first email I sent, I got a contribution. I felt so encouraged. I
sent out another wave of emails and more donations came in. Then I sent out a
third. Each grouping of emails brought in more donations and before I knew it,
we had surpassed our fundraising goal.
One donor in particular really
touched me - a woman who I know is struggling financially donated $25 to
Matthew's Warriors when she really couldn't afford to donate anything. It's
things like that that really motivate me to keep going.
2, was diagnosed with CF via a sweat test. His grandfather says he's a happy
baby who loves to watch planes land and stare at the moon.
As painful as it is, you have to talk
about this disease. People want to help, but they can't read your mind. You have
to educate others about CF, what it is and how they can help.
also encourage teams to ask donors if their employers have a matching gift
program. These programs are like magic. If an employee donates, their company
will sometimes double or triple that donation - but the employee has to ask. As
a fundraiser, it's important to ask people to take this one extra step to see if
their company will match their gift. I've found that most organizations
My dream would be that science and
research makes CF a condition people can live with. I want everyone with CF to
have the ability to live a full, meaningful life. That would be a gift.
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With more than 70 chapters and offices across the country, it’s easy to find and join a local Cystic Fibrosis Foundation chapter near you.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
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