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.
On Feb. 24 and 25, the Cystic Fibrosis
Foundation presented three Legislative Champion Awards to Senator Ron
Wyden (D-Ore.), Senator Orrin Hatch (R-Utah) and Congressman Lloyd Doggett
(D-Texas) for their ardent support of the CF community and their sponsorship
of S. 139/H.R. 209, the Ensuring Access to Clinical Trials Act.
Published on March 3, 2016
This bill, which the CF Foundation helped successfully
pass in October through robust advocacy efforts, means that those people with
rare diseases can permanently participate in clinical trials without the fear
of losing critical government benefits.
CF volunteers from across the
country celebrated the three elected officials at a reception one day prior to
the Foundation's annual signature advocacy event, March on the Hill. Finance
Committee staffer, Jeff Wrase, accepted the award on behalf of Senator Hatch
at the reception. Morgan Rawson, a CF advocate from Utah, introduced the work
of Senator Hatch and thanked him and his staff for their work in passing
this vital legislation.
Jeff Wrase (right), chief economist in the Senate Committee on Finance, with Mary Dwight (left), senior vice president of policy and patient assistance programs, accepted the Legislative Champion Award on behalf of Senator Hatch.
"Senator Hatch has dedicated a great
deal of his career to working with the rare disease community," said Rawson.
"He exemplifies CF advocacy and the spirit to protect those with CF and their
families. We are grateful to have him as one of our champions on Capitol
Congressman Doggett and Senator Wyden were unable to attend the
reception, but received their awards the following day during March on the
Hill in meetings with volunteer advocates and CF Foundation staff.
Senator Wyden (center) accepts the Legislative Champion Award from the CF Foundation’s national advocacy co-chair Rebecca Schroeder (right) and her husband, Brock.
"I'm pleased to accept this award on
behalf of the families in Oregon and across the country whose lives are
affected by cystic fibrosis and other rare diseases. These families now can
have access to vital, potentially life-saving research, without fear of
losing their medical benefits," said Senator Wyden.
rare diseases and their families need our support. Now they can better
explore alternative treatments for their life-threatening illness without
fear of losing their medical benefits. Working with the Cystic Fibrosis
Foundation, I am very pleased we have succeeded in permanently removing a
barrier to life-saving research," said Rep. Lloyd Doggett.
Debbie Teesdale (left) and Melissa Eades (right) present Representative Doggett (center) with the CF Foundation Legislative Champion Award during the tenth annual March on the Hill.
The CF Foundation is extremely grateful
for the support and dedication of all of our champions in Congress and the
hard work of our volunteer advocates in passing the Ensuring Access the
Clinical Trials Act. Our volunteers held hundreds of meetings with their
elected officials about the importance of this legislation and sent more
than 11,000 emails urging their members of Congress to pass this critical
bill into law.
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