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.
In the fall of 2017, I was asked to join the Advanced Lung Disease Guidelines Committee as a parent representative because of my work as a member of Community Voice. I was honored and said, “Yes!” I am so pleased I did, because my experience gave me great hope and valuable insight into the dedication that goes into improving cystic fibrosis care.
March 12, 2019
The 3 Words I Want Every Single Hospital Employee to Hear
5 Things I Wish My Care Team Knew About Me
At the time, I really knew nothing about clinical care guidelines committees or the critically important work they perform. Today, I do! And so, I would like to share some insights from my 15-month experience in the hopes that you, too, will become familiar with the work of these committees, develop a better understanding of their impact on improving and standardizing cystic fibrosis care, and take advantage of the opportunity to comment on draft manuscripts through programs like Community Voice.
It began with a day-long kickoff in October 2017. I found myself in a meeting with CF medical specialists from different universities, hospitals, and care centers representing a diverse range of disciplines -- from transplant surgery to pulmonology, social work, and pharmacy. The committee also included two adults with CF, one of whom was there in person and one of whom called in via video link. As the day progressed and various topics were discussed, I learned that the committee members had a long history with CF, were subject matter experts, respected each other's opinion, listened attentively, and knew improvements could and should be made.
Although I have been in a number of important high-level business meetings in my professional life, this one was unique. I came home feeling honored to be on the committee and told both my wife, Judy, and our son, Chad, that this was one of the most satisfying and energizing days I had spent in some time. It was so gratifying to see firsthand how so many individuals are driven to care for those with CF and advanced lung disease.
All recommendations for any clinical care guideline are based on the latest research, medical evidence, and consultation with experts on best practices. To meet this hurdle, three work groups were formed, and the hard work began. I was selected to serve with four other committee members on the work group that focused on improving symptom management and end-of-life planning. In a full committee meeting this past December, we reviewed over 30 recommendations, six of which were prepared by our work group. They are now under review for finalization.
For me, this was a true gift. I participated with a group of individuals driven by a single goal: to improve care for individuals with advanced lung disease. They appreciated the value that a parent can provide and were gracious enough to listen to my views.
Unlike so many other initiatives in which I have participated, there were no separate agendas. The objective was clear. From these individuals, all of whom volunteered their time, I learned so much about the complexities of advanced lung disease from a medical standpoint as well as the financial concerns and psychosocial behaviors involved. These factors not only impact the individuals with advanced lung disease and their families, but the lung transplantation teams, CF care teams, and the entire support system.
As a parent with a son who has faced the possibility of a lung transplant, I now have an even greater appreciation for his many challenges and the need for strong support systems. It has given me cause to learn more and to re-evaluate how I can be more helpful. I know my wife and I will be more engaged and better parents as our son and his family face this journey.
As I reflect on my experience, I only wish that every individual with CF, every parent, and every loved one could witness firsthand this type of a discussion. The knowledge, commitment, dedication, and passion of every committee member gave me great hope that these efforts and initiatives will go well beyond this particular discussion to those fighting CF and their families. I am confident that you, too, would share this same optimism.
These clinical care guideline committees, which have been convened to address a wide array of issues including lung transplantation, are only possible with the support of CF Foundation leadership, care center staff, and the resources dedicated to this effort. I know that this work, like so many other programs, will continue to improve the quality of care on multiple fronts, beyond what could be imagined today.
Join the conversation on Facebook.
Father of an adult with CF
Carl recently retired from a 50-year career in housing policy, programs, development, and finance. He resides in Vienna, Va., with his wife, Judy, who he has been married to for 40 years. He and Judy raised three amazing children -- Chris, Chad (who has cystic fibrosis), and Cassandra -- all of whom are now married to wonderful spouses and have blessed them with 5 incredible grandchildren. Carl and his family have been involved with the Foundation for over 30 years. In addition to focusing his fundraising efforts on Chad's Great Strides team alongside his wife, Carl serves on the board of the Metro D.C. Chapter and is currently Outreach Chairman, focusing on care centers and advocacy efforts. Carl looks forward to dedicating more time to the Foundation's efforts in retirement while continuing to serve on a nonprofit community development board, participate in church ministries, and mentor young professionals. Follow Carl on Twitter.
Share this Post
This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails