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.
Advocacy efforts to raise awareness about cystic fibrosis and ignite change don't just happen on Capitol Hill during events like March on the Hill and Teen Advocacy Day. In fact, advocacy is a continuous effort that begins, and is highly effective, at home.
Given the incredible advances in drug development and the state-of-the-art care center model, it is more important than ever that all people with cystic fibrosis have access to adequate, affordable health care coverage. By advocating for access to high-quality, specialized care such as care centers and the innovative drugs coming out of the pipeline, we can make an incredible difference in the day-to-day lives of people living with this disease. CF advocates achieve success by continuously cultivating relationships with their federal and state representatives.
While traveling to Washington, D.C., and telling your CF story on Capitol Hill is exciting and impactful, scheduling in-district meetings with federal lawmakers is a great way for advocates to build relationships and cultivate a continuous drumbeat of advocacy. According to the Congressional Management Foundation, the average member of Congress is home 40 weekends a year, and, while at home, lawmakers tend to have more time to spend with advocates and are less distracted by their obligations in D.C.
Congressional recesses are ideal times to schedule meetings with members of Congress. In-district meetings help foster positive and productive relationships with members of Congress and help ensure that they better understand the need for adequate, affordable, and accessible health care coverage for people with cystic fibrosis.
The 2019 Congressional Recess calendar is as follows*:
*Note: Recesses are subject to change. Please visit senate.gov or house.gov for a full calendar.
After you have scheduled the meeting, contact your local chapter and the Cystic Fibrosis Foundation and ask for talking points and materials. Additionally, visit the lawmaker's website, Facebook page, or Twitter feed to see the member's most recent statements and positions on health care. Make sure to prepare and practice your personal story and think about any visual aids that may appropriately depict your story in a way that's impactful.
After your meeting, it is important to follow up with the office as well as the Foundation. If you get a question that you were unable to answer, tell the lawmaker that you will follow up. The Foundation is always available to help with the response.
The Foundation also encourages you to talk about your time meeting with your federal lawmaker on social media. Use the hashtag #CFadvocacy and tag the Foundation, as well as your lawmaker's official account, before and after your meetings. You can also use social media to say “thank you” and share any photos you took during the meeting.
Periodically, the Foundation will notify advocates about opportunities to participate in certain legislative campaigns, or to share their stories during a town hall or local forum. While you will be acting in your capacity as an individual, the Foundation can provide you with materials and guidance on current bills or discussions and how they would impact the CF community.
If it is an election year, you can also use this time to ask questions of the candidate or elected official. Knowing where candidates stand on health care issues can result in a more informed CF community during elections.
Letters to the editor (LTEs) are one of the most effective ways to advocate at a local level. The LTE/opinion section is consistently one of the most read sections of a community newspaper. Many members of your community, including members of Congress, read this section to stay up-to-date on conversations happening in the community.
Each publication has different rules for submitting LTEs. However, some general rules apply:
If you have questions on getting started, contact the Foundation by emailing email@example.com.
Your local Foundation chapter is a great resource for local events that can serve as advocacy opportunities.
Throughout the year, evaluate chapter events that may serve as an opportunity to discuss the importance of advocacy and how others in your community can be involved. Fundraising events like Great Strides provide opportunities to connect with other members of your community to share how you're advocating and ask them to join you in doing so.
You can also work with the CF Foundation to set up a care center tour for your policymakers. This is a wonderful opportunity for policymakers to not only learn about the intricate and complex care center model, but also connect with their community and see the realities of CF.
There is strength in numbers. We always welcome more people who are interested in advocating for the needs of the community. As you continue to advocate, make sure that you empower others to advocate as well. A few ways to do this are:
Extend the invitation to community members who are interested. Have them text “FIGHTCF” to 52886 to begin receiving advocacy alerts and information on how they can make a positive change for the CF community.
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Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
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