Parent of a Child With CF

Child just diagnosed?

You may have a lot of feelings and questions, and may not know where to start. We've pulled together a few of the key things you should know, and sources of help and support, right here on this page. Keep reading. You're in the right place.

Learn about CF

CF is a genetic disorder that affects the lungs, pancreas, and other organs. While there is not yet a cure, we've come a long way with treatments and guidance for managing and living with this chronic disease. And especially when treatment begins at a young age, the future is brighter than you might think.

Read more
Find a CF care center

First, you'll want to find an accredited CF care center in your area, and get ready to build a relationship with the people there. They will be your #1 source of medical guidance. They'll work with you to create, and help you follow, a treatment plan that works with your life. And they'll stick with you, helping to guide your child as they grow up and become more responsible for their own treatment.

Find a Care Center
Connect with others who have CF

Even though CF is a rare disease, there are plenty of other parents who've been right where you are.

Connect 1:1 with another parent
Attend an event

Even during COVID, there are lots of events you can attend to get support and learn more about CF.

Attend an Event
Read the CF Community Blog

The CF Community Blog is all about sharing the experiences, reflections, and perspectives of the cystic fibrosis community.

Community Blog
A group of 9 young adults smiling and looking at the camera. They are dressed in fancy clothing, attending one of the CF Foundation "Finest" events.
Find a Local Chapter Find a local chapter

We have about 70 chapters and offices across the country that work diligently to raise funds and support our community in the search for a cure. They host events (including virtually and outdoors) and serve as a hub for the CF community. Get to know them!

For help with Insurance, Financial, Legal, and Other Issues

Contact a dedicated CF Foundation Compass case manager:
Call us at 844-COMPASS

Mon - Thu, 9 am - 7 pm ET
Fri, 9 am - 5 pm ET

More Ways to Get Help