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.
Sometimes, being the “squeaky wheel” is the
only way to make a positive change.
February 16, 2016
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A Different Meaning for the Word “Love”
In 2012, I had
the honor of being asked to sit as a patient representative on Patient Family
Centered Care Committee at the University of Colorado. The university hospital
took care of cystic fibrosis patients for in-patient care at that time, and
they really wanted to improve the care that they delivered. It was a
collaboration with care
team members that included respiratory therapists, nurses and doctors, and
I brought the patient perspective. I felt that I was making positive changes
to our health care by advocating for the CF community. The
committee's work eventually ended, but I found that I valued working alongside
the health care team.
When I went back to school in 2013, I knew that
I wanted to make a difference in the lives of other adults with CF by
becoming a patient advocate. I wanted to continue working with care teams to
improve health care delivery for patients. I felt that this was my calling.
About one year later, I realized that I wanted to help patients now instead
of waiting until graduation.
I reached out to my local adult CF center to see if it might
be possible to start a patient advisory council. Patient advisory councils
work with health care organizations to improve the patient and family
experience of care in a number of ways. For example, patients and family
members can serve on committees with clinic staff to ensure that the
patient's perspective is part of quality improvement initiatives. I thought
it would be great to get patients and the health care team to work together
to improve care. Unfortunately, the response to my proposal was not quite
the one I wanted to hear. I was told it wasn't the right time
because clinic staff was working on many internal changes that required
their attention first. I felt a bit deflated. However, I continued to check
in periodically to see if now was the right time. Although clinic
staff supported the idea, the answer was always the same: not yet. About one
year later, I had just about lost hope that the right time would ever
arrive. However, I tried once more and one of the nurse coordinators was
willing to begin.
Elated, I jumped right into it. We created a closed Facebook
group for clinic patients who wanted to join the council, which enabled us to
safely discuss our health care without infection or privacy concerns. I now
relay the Facebook conversations to the nurse coordinator and the social
workers at the clinic about once a month, and we discuss the best ways to
address the issues and concerns.
This endeavor has been going on since
June 2015, and even as new as the group may be, the collaborative work
between the patients and the health care team have yielded some great ideas
for change. For example, to make it easier for patients to contact the right
member of the care team, we suggested creating magnets with important care
center phone numbers. These magnets have been handed out to patients and
their families since December. The Facebook group also discussed the best
ways to introduce patients who are transitioning from pediatric care to the
adult clinic. The end product, which came out of the communication between
the Facebook group and the health care team, was a bag with materials that
help new patients and families learn what to expect at the clinic. The bags
include the magnets mentioned above and other important materials for new
These improvements happened because patients and
the staff worked together.
I want to encourage anyone hoping
to start their own patient advisory council to pursue it -- with patient
persistence, if need be. It took me about a year of bugging my health care
team to finally turn it from an idea into a reality. Did I mention that I
began to lose hope? That's normal, but even when feelings of hopelessness set
in, continue pursuing it. Keep talking to people about the idea: health care
staff, other patients, friends and family. Eventually, someone will help
launch the group.
It's worth it. Especially because if patients and
family members want to make a change, the best way to ensure that change can
happen is by speaking up and working in harmony with their CF care team.
That's the starting place.
Patient advisory councils offer a positive
way to advocate for change, and, as a result, improve the health of those of
us with CF. Change can take time, but the wait is worth it. That's when
patient persistence becomes a great ally.
Adult with CF
Anna has a Bachelor of Science degree in Patient Advocacy. She also volunteers her time at National Jewish Health as the chair of the Patient Advisory Council and as the patient representative for the CF Quality Improvement Team. She also participates in the Foundation's Community Voice. When she isn't spending her time at National Jewish or the CF Foundation, she's drinking coffee, building relationships, and spending time with her two kids, Lily and Liam.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
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