We want you to have all the information you and your child need to understand your child’s condition and to participate in treatment. This page provides links to resources we hope will be helpful.

Resources at Seattle Children’s

Cystic Fibrosis (CF) Resources

Exercise and CF

Respiratory therapy for CF

CF tests and other resources 

General Cystic Fibrosis Resources

Books

The following books are available for checkout at our Family Resource Center, or through online booksellers.

  • An Introduction to Cystic Fibrosis: For Patients and Families (2013). James Cunningham, MD, and CF Foundation.
    Guide for patients and families. Provides definition of CF and how it affects the various parts of the body and discusses living with CF. Sixth edition. Available as a PDF.
  • Cystic Fibrosis: A Guide for Patient and Family (2012). David Orenstein.
    Offers practical information on day-to-day concerns, such as school, travel, exercise, nutrition, medications, physiological effects, long-term issues and prospects of a cure. Provides answers to frequently asked questions by patients and families. Fourth edition.
  • Parenting Children With Health Issues (2007). Foster Cline, MD, and Lisa Greene.
    Principles of parenting a child with special health issues. Also covers growth and development, siblings, emotional health and mental health topics.

External links

Support Groups and Classes

  • Sibshops
    Workshops for siblings of kids with developmental needs and/or special health concerns, including cystic fibrosis.
  • Happy Heart Families
    Educational website providing practical information and offering teleclasses for parents of children with CF.

  • Kindering Seattle
    Network assisting fathers as they become more competent and compassionate caregivers for their children with special needs.

  • Seattle-Area CF Parent Group
    This parent-led group gives parents and grandparents of children with CF in the Seattle area a way to connect with each other.

Videos

Contact Us

For more information, contact the Cystic Fibrosis Program at 206-987-2024. If you would like an appointment, ask your child’s primary care provider for a referral.

Providers, see how to refer a patient.