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  • What Is CF?
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    ABOUT CYSTIC FIBROSIS

    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.

    Role of Genetics in CF

    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.

    CF Genetics: The Basics
    CF Mutations Video Series
    Find Out More About Your Mutations
    Personalized Medicine
    Types of CFTR Mutations

    DIAGNOSIS

    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.

    TESTING FOR CYSTIC FIBROSIS

    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.

    Carrier Testing for Cystic Fibrosis
    CFTR-Related Metabolic Syndrome (CRMS)
    How Babies Are Screened in IRT-Only vs. IRT-DNA States
    Newborn Screening for CF
    Sweat Test
  • Life With CF
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    Caring for a Child With CF

    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.

    CF Infant Care
    PARENT AND GUARDIAN GUIDANCE

    Working With Your Child's School

    Individualized Education Programs (IEPs) and 504 Plans
    School Transitions for People With CF and Their Families

    Daily Life

    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.

    Adult Guide to Cystic Fibrosis

    CF and School

    For Teachers
    Managing My CF in College
    CYSTIC FIBROSIS-RELATED DIABETES

    Emotional Wellness

    Procedural Anxiety
    Substance Misuse
    Depression
    Coping While Caring for Someone With Cystic Fibrosis
    Anxiety
    Working With Your Care Team

    Fitness and Nutrition

    Fitness
    Nutrition and Your Digestive System

    Germs and Staying Healthy

    CF and Coronavirus (COVID-19)
    How Can You Avoid Germs
    What Are Germs?

    Traveling With CF

    Preparing to Travel
    In Transit and at the Destination
    Special Considerations While Traveling Abroad

    Transitions

    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.

    Managing My CF in College

    Accommodations for College
    Scholarships and Financial Aid

    Reproductive Health and Fertility

    Contraception and Protection
    How Does CF Affect the Female Reproductive System?
    How Does CF Affect the Male Reproductive System?
    Sex and CF: Some Practical Advice

    Family Planning and Parenting With CF

    Making Your Family Planning Decisions
    Pregnancy and CF
    Alternative Ways to Build a Family
    Parenting as an Adult With CF

    Colorectal Cancer and CF

    About Colorectal Cancer
    Preparing for a Colonoscopy When You Have CF
    What Happens After My Colonoscopy?

    Treatments and Therapies

    People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.

    Airway Clearance

    Active Cycle of Breathing Technique
    Airway Clearance Techniques
    Autogenic Drainage
    Basics of Lung Care
    Chest Physical Therapy
    Coughing and Huffing
    High-Frequency Chest Wall Oscillation
    Positive Expiratory Pressure

    Clinical Trials

    Clinical Trials 101
    What to Consider When Joining a Clinical Trial
    After the Clinical Trial: What’s Next?

    Lung Transplantation

    Being Referred and Evaluated
    Surgery, Recovery, and Life Post-Transplant
    Waiting for the Transplant
    What Is a Lung Transplant?
    What to Consider Regarding a Lung Transplant

    Medications

    Antibiotics
    Bronchodilators
    CFTR Modulator Therapies
    Mucus Thinners
    Nebulizer Care at Home
    Vascular Access Devices PICCs and Ports

    Partnerships for Sustaining Daily Care

    More Than Taking Medications
    The Partnerships for Sustaining Daily Care Initiative

    Treatment Plan

    CF Care Center Visits
    Managing Your Treatment Plan
    Partnering With Your Care Team
    Trikafta
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    Care Centers

    Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.

    CF CARE CENTER finder

    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.

    Clinical Care Guidelines

    The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.

    Age-specific Care Guidelines

    Adult Care Clinical Care Guidelines
    Infant Care Clinical Care Guidelines
    Management of CRMS in First 2 Years and Beyond Clinical Care Guidelines
    Preschool-Aged Care Clinical Care Guidelines
    CFTR Modulator Therapy Care Guidelines

    Diagnosis Care Guidelines

    CF Diagnosis Clinical Care Guidelines
    Newborn Screening Clinical Care Guidelines
    Sweat Test Clinical Care Guidelines

    Infection Prevention and Control Care Guidelines

    Allergic Bronchopulmonary Aspergillosis Clinical Care Guidelines
    Eradication of Initial P aeruginosa Clinical Care Guidelines
    Infection Prevention and Control Clinical Care Guidelines
    Nontuberculous Mycobacteria Clinical Care Guidelines

    Nutrition and GI Care Guidelines

    Colorectal Cancer Screening Clinical Care Guidelines
    Enteral Tube Feeding Clinical Care Guidelines
    Nutrition in Children and Adults Clinical Care Guidelines
    Nutrition in Pediatrics Clinical Care Guidelines
    Pancreatic Enzymes Clinical Care Guidelines
    Vitamin D Deficiency Clinical Care Guidelines

    Other CF-related Conditions Care Guidelines

    Bone Disease in CF Clinical Care Guidelines
    Cystic Fibrosis-Related Diabetes Clinical Care Guidelines
    Liver Disease Clinical Care Guidelines

    Respiratory Care Guidelines

    CF Airway Clearance Therapies Clinical Care Guidelines
    Chronic Medications to Maintain Lung Health Clinical Care Guidelines
    Guidelines for the Care of Individuals With Advanced CF Lung Disease
    Lung Transplant Referral Guidelines
    Pneumothorax and Hemoptysis Clinical Care Guidelines
    Pulmonary Exacerbations Clinical Care Guidelines
    SCREENING & TREATING DEPRESSION & ANXIETY GUIDELINES
    Best Practices in the Management of the Gastrointestinal Aspects of CF

    Clinician Resources

    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.

    Clinician Awards

    Clinician Career Development Awards
    Clinician Training Awards
    Mutation Analysis Program

    Network News

    Network News: February 2020
    Network News: NACFC 2019
    Network News: August 2019
    Network News: May 2019
    Network News: Previous Issues

    Partnerships for Sustaining Daily 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.

    MORE THAN TAKING MEDICATIONS
    The Partnerships for Sustaining Daily Care Initiative
    Success With Therapies Research Consortium

    Your CF Care Team

    Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.

  • Assistance Services
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    About Compass

    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.

    What Is Compass?
    Meet the Compass Team

    How Compass Helps People With CF and Their Families

    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.

    How Compass Can Help

    Understanding Insurance

    Medicaid
    Medicare
    Your Insurance Plan
    Social Security Disability
    Know Your Legal Rights

    Financial Matters

    Financial Planning
    Finding Financial Assistance
    Postsecondary Transitions
    Other Life Issues
    Disaster and Emergency Preparedness Plan

    How Compass Can Help CF Care Teams

    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.

    Connect With Compass

    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.

  • Research
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    About Our Research

    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.

    Path to a Cure
    Research We Fund
    RESEARCH OVERVIEW
    RESEARCH MILESTONES
    Track Record of Progress
    New Developments in Clinical Research
    Cystic Fibrosis Foundation Therapeutics Lab

    Developing New Treatments

    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.

    CFTR Modulator Types

    Clinical Trials

    Clinical Trials 101
    What to Consider When Joining a Clinical Trial
    After the Clinical Trial: What’s Next?
    CLINICAL TRIAL FINDER
    DRUG DEVELOPMENT PIPELINE

    Drug Development Pipeline 101

    About the Drug Development Pipeline
    How Drugs Get on the Pipeline
    Trailblazer CF Clinical Trials Campaign

    Research Into the Disease

    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.

    Research Into CF Complications

    Gastrointestinal Issues and Cystic Fibrosis-Related Diabetes
    Infection Research Initiative
    Infections
    Inflammation
    Mucus

    Restore CFTR Function

    Basics of the CFTR Protein
    CFTR Modulator Types
    Exploring Treatments for Nonsense and Rare Mutations
    Gene Therapy for Cystic Fibrosis
    Gene Editing for Cystic Fibrosis
    Gene Delivery for Cystic Fibrosis Therapy
    Stem Cells for Cystic Fibrosis Therapy

    Role of Genetics in CF

    CF Genetics The Basics
    CF Mutations Video Series
    Find Out More About Your Mutations
    Personalized Medicine
    Types of CFTR Mutations

    Researcher Resources

    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.

    Awards and Grants

    Applicant Resources
    Career Development Awards
    COVID-19 FAQs for Applicants and Awardees
    Funding Opportunities
    Research Awards
    Training Awards
    CF BASIC RESEARCH CENTERS
    Community Input into Research
    Industry Funding Opportunities
    National Resource Centers

    North American CF Conference

    2020 NACFC
    Carolyn and C. Richard Mattingly Leadership in Mental Health Care Award
    Mary M. Kontos Award
    Paul di Sant’Agnese Distinguished Scientific Achievement Award
    Quality Care Awards
    Richard C. Talamo Distinguished Clinical Achievement Award
    Robert J. Beall Therapeutics Development Award

    Patient Registry

    2019 Patient Registry Annual Data Report
    2019 Cystic Fibrosis Foundation Patient Registry Snapshot
    Care Center Data
    Understanding Changes in Life Expectancy

    Research Consortia

    CF Biomarker Consortium
    CFTR 3-D Structure Consortium
    CFTR Folding Consortium
    Epithelial Stem Cell Consortium
    Mucociliary Clearance Consortium
    NTM Consortium
    SUCCESS WITH THERAPIES RESEARCH CONSORTIUM

    Therapeutics Development Network

    TDN Coordinating Center Study Support
    TDN Womens Health Research Working Group
    Working With the TDN

    Tools and Resources

    Antimicrobial Tools and Resources
    Bioinformatics Tools for CF
    Cell Model Resources
    CFTR Antibodies Distribution Program
    CFTR Assays
    CF Foundation Biorepository
    CFTR Chemical Compound Program
    CFTR Protein Domains
    Patient Registry Data Requests
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Parent and Guardian Guidance

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  • Clinical Care Schedule for Newborns to 5-Year-Olds with CF
    PDF  88 KB

Parent and Guardian Guidance

  • Diagnosis
  • Your Care Team
  • How CF Is Treated
  • Germs and Staying Healthy
  • Nutrition
  • Navigating Insurance
  • Parenting a Child With CF: What to Expect
  • Coping While Caring for Someone With CF
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Learning that your child has cystic fibrosis can be overwhelming. You may feel sad, guilty, scared, or even angry, but you are not alone. We are here to help.

Diagnosis

The first step in treating cystic fibrosis is confirming a diagnosis. If you or your doctor suspects your child may have CF, a sweat test will likely be ordered. A sweat test is the most reliable way to diagnose cystic fibrosis.

This simple, painless test measures the concentration of salt in a person's sweat. A high salt level indicates CF. It is important to have a sweat test done at a Cystic Fibrosis Foundation-accredited care center, where strict guidelines help ensure accurate results.

Watch the video to hear CF clinicians discuss:

  • What CF is and common CF symptoms
  • Information about the sweat test
  • How a sweat test is done

Learn more about sweat tests and how doctors diagnose cystic fibrosis here.

If your child is diagnosed with cystic fibrosis, you likely have lots of questions. Can my child live a normal life? How can I help my child get the best possible care? What will my child need to stay healthy? Although it may take you and your family time to adjust to the news that your child has CF, it helps to know that you are not alone.

Learn more about CF -- from diagnosis to living with the disease as an adult -- in "An Introduction to Cystic Fibrosis: For Patients and Their Families," or watch the video series.

Hear Preston Campbell, M.D., our current president and chief executive officer, talk about:

  • What it means for your newborn to be positively diagnosed with CF
  • Common questions and concerns
  • Hope for the future of the disease

Fighting CF is a team effort. Every day, people with CF and their families, health care professionals, researchers, donors, and volunteers work together to advance the search for a cure and improve the quality of life for those with CF.

Watch a brief video on how clinical research has made a difference in the lives of people with CF.

We know that a positive CF diagnosis can be scary, but take action by getting involved in your local CF Foundation chapter.

Your Care Team

The best place to receive comprehensive cystic fibrosis care is at one of the more than 130 Cystic Fibrosis Foundation-accredited care centers nationwide, which specialize in treating CF.

Because CF is a complex disease, caring for someone with the disease requires a team approach. At the center of that team is you, your child, and your family. Guiding you every step of the way and providing specialized, comprehensive care are experts and specialists, including CF nurses and doctors, dietitians, social workers, psychologists, and respiratory therapists who are all trained in treating infants and children with CF. 

Watch the webcast below featuring Peter Moygazel, M.D., Ph.D., to learn more about the pediatric CF care team, including:

  • The importance of partnering with your child's CF care team
  • An overview of the members of the pediatric team and the roles they play
  • How you can be a full member of the CF care team to help your child with CF thrive

Partnering for Care: Help Your Child's CF Center Help Your Child Thrive | Webcast 

You and your child can expect to have regular visits with this care team for checkups and check-ins multiple times a year. Members of your CF care team will test your child's lung function, prescribe necessary medications and treatments and work closely with you to help you manage your child's disease.

Learn more about your child's CF care team.

Listen to CF clinicians discuss:

  • When to visit a care center or pediatrician
  • What each member of the multidisciplinary care team does
  • What happens at a clinic visit

How CF Is Treated

Treating a complex disease like cystic fibrosis requires therapies that address problems in different parts of the body, especially the lungs and the digestive system.

Cystic Fibrosis Foundation-accredited care centers work closely with people with CF and their families to create individualized treatment plans.

Each day, most people with CF typically do some form of airway clearance to help loosen and get rid of the thick mucus that can build up in the lungs. Many people with CF use an inflatable vest that vibrates the chest at a high frequency to help loosen and thin mucus.

Most people also take inhaled medicines -- liquid medicines that are made into a mist or aerosol and then inhaled through a nebulizer. These medicines include antibiotics to fight lung infections and therapies to help keep the airways clear.

https://www.instagram.com/p/BUKQXhUB831/

Watch parents of children with CF and a respiratory therapist talk about:

  • What airway clearance is and why it's important
  • Managing lung health
  • The different techniques used for airway clearance 

People with CF typically take pancreatic enzyme supplement capsules with every meal and most snacks to improve absorption of vital nutrients.

Recently approved drugs for CF include ivacaftor (Kalydeco®) and lumacaftor/ivacaftor (Orkambi®), which treat the underlying cause of CF in a small number of people with specific mutations of the CF gene. All other CF therapies available today treat the symptoms of CF.

Work is ongoing to find additional CF therapies that could help improve key symptoms of the disease by targeting the disease at its root.

Learn more about treatments and therapies for CF.

Germs and Staying Healthy

In addition to daily treatments and regular visits with your care team, caring for someone with cystic fibrosis means being “germ smart.” For people with CF, some germs can cause serious lung problems, including lung infections. That's because thick, sticky mucus builds up in their lungs, allowing germs to thrive and multiply.

Germs are all around us, but there are steps you and your family can take to avoid germs and help keep your child healthy. Basic ways to help your child avoid germs include teaching them to:

  • Clean their hands
  • Cover their cough
  • Clean and disinfect their nebulizer
  • Not share personal items
  • Avoid frequent contact with dirt

Listen to four families discuss:

  • Sending their children with CF to day care for the first time 
  • Germs and infection prevention
  • Educating day care staff

Learn more about germs and bacteria that are especially dangerous for people with CF and what you can do to be germ smart.

Listen to CF clinicians, parents, and people with CF discuss:

  • How to prevent germs
  • Ways to keep children with CF as healthy as possible
  • The importance of incorporating fitness and nutrition into everyday life

Nutrition

Proper nutrition -- including a high-fat, high-calorie diet rich in vitamins and minerals -- is vital for people with cystic fibrosis, especially children. Thick mucus often gets in the way of proper digestion and the disease can rob children of the nutrients they need to grow.

To help compensate, almost everyone with cystic fibrosis needs to take pancreatic enzyme supplements with meals and snacks. Taken by mouth, the enzymes go to work in the intestines to help digest food so it can be absorbed by the body. If enzymes and proper nutrition alone aren't enough, a feeding tube may be required.

Watch parents of children with CF and a dietitian talk about:

  • Proper nutrition
  • GI issues
  • Their own tips for giving enzymes to infants with CF 
Learn more about how proper nutrition can help treat CF.

Navigating Insurance

Today's insurance landscape can be hard to navigate, but we are dedicated to helping you get the coverage you and your family need.

  • Find, evaluate, and compare different health insurance options
  • Answer questions about your current health insurance plan
  • Identify programs to help pay for costs
  • Find a healthcare provider in your area

Learn more about navigating insurance.

Parenting a Child With CF: What to Expect

Most people with cystic fibrosis live a normal daily life, with the challenge of incorporating daily medications, airway clearance techniques, and other treatments and medications. Children with CF grow up, go to school, have friends, have hobbies, and can exercise and play sports. Many go to college. Many marry and have families.

In addition to managing your child's treatment and care, it helps to understand what to expect as your child grows.

Watch parents of children with CF and their kids discuss:

  • Their own tips for parenting a child with CF
  • Incorporating CF into daily family life
  • Finding a balance between CF and healthy childhood development

Caring for Your Infant

As the parent of an infant with CF, you may have many questions and may be feeling a range of emotions. In addition to comprehensive care and medical support, the Cystic Fibrosis Foundation offers the "Pathways to Lifelong Health" video series for parents of babies recently diagnosed with CF. This series includes perspectives from both CF care team members and CF parents and covers topics including diagnosis, nutrition, airway clearance, balancing daily life, and CF care and support.

Watch the video series here.

Learn more about recommended clinical care guidelines for newborns to 5-year-olds, including a schedule to guide care teams.

Working With Your Child's School

Caring for and treating cystic fibrosis doesn't just happen at home. It happens every day, everywhere your child goes -- including day care and school.

Letting a day care or school know your child has CF is a personal decision. You do not have to disclose this information, but enlisting the help of educators can make it easier for your child to achieve their academic goals while maintaining their health.

We offer a number of resources for parents of children with CF who are starting school, including information about how to educate teachers about the disease, a letter template for informing a school that your child has CF, what to do when there is more than one child at school with CF, and more.

Watch families, a school health coordinator, a care provider, and a social worker talk about:

  • Partnering with the school staff to manage your child's daily CF care
  • Accommodating the specific needs of students with CF
  • Avoiding germs and infection prevention

Learn more about working with your child's school.

Talking to Your Child About CF

A child's first questions about CF often come after starting school. He or she sees that other children do not take enzymes or do daily airway clearance. They may be asked questions about CF by other children, adults, or teachers.

The goal of telling your child about CF is to help your child know what CF means and why eating right, taking enzymes and other medicines, and doing airway clearance is important. Another goal is to get your child ready to do his or her own care. Children should be taught about CF as soon as they can understand. What you say to your child depends on his or her age, personality, and ability to understand. If you have questions, ask your CF care team for help.

Watch the families of children with CF discuss:

  • The importance of being open and honest about their child's CF
  • Fostering healthy growth and development
  • Their own tips for addressing common questions and concerns

To learn more about how people with CF can go on to lead long, fulfilling lives, watch an adult with CF discuss:

  • Going to college and pursuing a career
  • Getting married
  • Managing her disease to accomplish her goals

Coping While Caring for Someone With CF

Caring for anyone with a long-term disease -- especially if that person is your child -- is stressful. Parents of children with cystic fibrosis are more likely to experience anxiety, depression, or both compared to parents in general. Parents of a child with CF can focus so much on caring for their child that they do not notice when they are beginning to have problems themselves.

But you are not alone. If you recognize signs of stress, talk to your child's care team and your primary care provider so they can work with you on ways to reduce it. This way, you can avoid developing more serious depression and anxiety.

Learn more about coping while caring for someone with CF.

***

Reference to any specific product, process, or service does not necessarily constitute or imply its endorsement, recommendation, or favoring by the Cystic Fibrosis Foundation. The appearance of external hyperlinks does not constitute endorsement by the Cystic Fibrosis Foundation of the linked websites, or information, products, or services contained therein.

Information contained on this site does not cover all possible uses, actions, precautions, side effects, or interactions. This site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

FDA-approved drug information is available at dailymed.nlm.nih.gov/dailymed.

Further Reading

  • “Ma, I got it.”
  • Teaching Through Example
  • Real Talk: Expectations vs. Reality – Part 1
  • Helping Our Children Understand Anna’s CF

Downloads

  • Clinical Care Schedule for Newborns to 5-Year-Olds with CF
    PDF  88 KB

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