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.
Because of the COVID-19 outbreak, millions of Americans, including those living with cystic fibrosis and their families, are facing tough decisions around employment. The issue of paid leave and its eligibility is emerging as a top concern for people with CF and working members of their family.
There is no evidence to suggest that people with underlying health conditions are at higher risk of becoming infected with the novel coronavirus. However, according to the Centers for Disease and Infection Control (CDC), there is evidence to show that people with underlying health conditions, including lung disease, are at risk of developing serious illnesses from COVID-19 if they become infected. As a result, people with CF and working members of their household are looking for ways to reduce their risk of COVID-19 exposure to protect themselves and their loved ones.
However, people in the CF community have reported issues with receiving extended leave or remote work arrangements during the COVID-19 crisis, which leaves them with a potentially difficult choice of discontinuing work or increasing their chances of being exposed to the virus.
Below are resources to consider and information about current employment laws that protect working Americans. This is not intended to be legal advice but is meant to be an educational resource. The Cystic Fibrosis Foundation encourages you to seek legal advice from an attorney should the need arise.
The availability and coverage of these benefits will vary based on employer. Be sure to review your employer's benefits guide and/or employee handbook, which should aid in understanding benefits to which you may be entitled. In addition, it may be helpful to schedule time with your human resources representative to discuss your benefits and specific situation. Some benefits your employer may offer include:
FFCRA requires certain employers to provide eligible employees with paid sick leave or expanded family and medical leave, at full or partial pay, for specific reasons related to COVID-19. Learn more with the Department of Labor's FFCRA overview.
The CARES Act provides an economic stimulus payment to certain individuals and enhances unemployment compensation by extending the length of time individuals may collect unemployment and increasing the amount of unemployment pay individuals can collect. For more information on filing for unemployment in your state, locate your state's unemployment office and contact them.
For more information on FFCRA or the CARES Act, see summaries from the Department of Labor (PDF) or CF Roundtable.
FMLA is a federal law that requires covered employers to provide up to 12 weeks of unpaid, job-protected leave to eligible employees for specified family and medical reasons, which may be increased to up to 26 weeks for situations involving people with military service. These reasons include, but are not limited to:
The employer is not required to pay the employee, but eligible employees are entitled to continue the group health insurance coverage under the same terms and conditions as if the employee had not taken FMLA leave. Approval for FMLA is not automatic and an employer may deny FMLA after reviewing an individual's circumstances. For more information on your rights under FMLA, see the Department of Labor's Employee Protections Under FMLA Factsheet or the Equal Employment Opportunity Commission. The Department of Labor's Guide on the FFCRA has information on the circumstances under which employees may have the right to be paid for medical and family leave.
The ADA is a federal law that requires covered employers to make a reasonable accommodation for an employee with a disability that substantially limits a major life activity, including, but not limited to caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.
When requesting a reasonable job accommodation, make sure you follow your employer's policy for making a request. For assistance in requesting a reasonable job accommodation with your employer, speak to an expert at the Job Accommodations Network (JAN), which provides free consulting services for all employees, regardless of their health status. Services include one-on-one consultation about all aspects of job accommodations, including the accommodation process, accommodation ideas, product vendors, referral to other resources, and ADA compliance assistance. The CF Foundation takes no position regarding the availability of a reasonable accommodation in your specific workplace or JAN's ability to help in any specific case.
Short-term disability is a type of insurance that provides some income for an employee who must leave work due to a temporary disability. Short-term disability can be offered as a benefit by your employer or you can purchase this insurance on the market. Short-term disability benefits vary widely among employers and may not cover those who have COVID-19 or those who want to reduce their risk of exposure to COVID-19. If you have questions about short-term disability offered by your employer, review your employer's benefits guide and/or employee handbook, which should aid in understanding benefits to which you may be entitled. In addition, it may be helpful to schedule time with your human resources representative to discuss your benefits and specific situation.
CF Foundation Compass can help connect you to resources related to employment during COVID-19. Please call us at 844-COMPASS (844-266-7277), Monday through Friday, 9 a.m. until 7 p.m. ET, or email us at email@example.com. For more information about employment law and the various options for the CF community, please contact the CF Legal Information Hotline at 1-800-622-0385 or CFLegal@sufianpassamano.com.
The CF Foundation does not endorse or confirm the accuracy of any of the websites provided on this page. The links shared are for information purposes only and the reader should exercise their own judgement when reviewing content.
Share this Page
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