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.
Nearly 200 teens from across the country -- nearly half living with cystic fibrosis -- participated in the Foundation's Virtual Teen Advocacy Day to advocate for the CF community.
Published on June 26, 2020
Nearly 200 teen advocates from across the country -- almost half of whom are living with cystic fibrosis -- participated virtually in the Cystic Fibrosis Foundation's 12th Annual Teen Advocacy Day on June 24 and 25. Teen Advocacy Day, one of the Foundation's flagship advocacy events, typically convenes advocates to meet with members of Congress in Washington, D.C. This year, due to the COVID-19 pandemic, our teen advocates gathered virtually, marking the first time in the Foundation's history where this many people with CF were able to attend an advocacy event along with their loved ones.
The event included two days of training where teens learned different ways to share their personal stories and unique experiences living with cystic fibrosis, especially during an ongoing public health crisis. Specifically, the teens asked members of Congress to support the expansion of paid Family and Medical Leave for those vulnerable to the adverse effects of COVID-19 and for their family members during the pandemic.
The CF Foundation continues to lead more than 160 patient advocacy groups, shoring up support from lawmakers for expanded paid leave after hearing from the CF community of the worries and concerns of having to choose between their health and their paycheck. The U.S. House of Representatives passed legislation in mid-May that supports such expansion. The Senate has yet to respond to the legislation. Teen voices play an important role in our continual work to expand paid leave during this time.
During the event, teens heard from guest speakers, such as Jesse Barba, senior director of external affairs at Young Invincibles, a young adult advocacy group dedicated to mobilizing the younger generation to advance solutions on higher education, health care, jobs, and civic engagement. Barba helped participants see the issue of paid leave through the lens of a young person and reiterated the importance of civic engagement. During his discussion, Barba noted that “data points may come and go, but a good story lasts forever.”
U.S. Representatives Jim McGovern (MA-02) and Mark Amodei (NV-02), co-chairs of the Congressional CF Caucus, shared special messages about the power of teen voices when connecting with Congressional members.
A large portion of the event was concentrated on establishing connections between the teens through more than 20 breakout groups where participants began to explore how they would construct their stories. The breakouts allowed for participants to receive feedback from their peers before they started creating videos and other creative works to send to their members of Congress.
Abbi Hile and Talon Hyatt -- Foundation interns and former Teen Advocacy Day attendees -- mentored this year's participants and discussed the importance of sharing personal stories to advance policies that improve the lives of people living with CF. Both Hile and Hyatt have siblings with CF.
Watch the teens' videos and follow the Foundation and your local chapter on social media using the hashtag #CFadvocacy to track posts from the event.
To learn more information about the Foundation's advocacy efforts, text FIGHTCF to 96387*, or sign up for the Foundation's advocacy alerts.
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