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.
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.
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.
Even though CF is a rare disease, there are plenty of other parents who've been right where you are.
Even during COVID, there are lots of events you can attend to get support and learn more about CF.
The CF Community Blog is all about sharing the experiences, reflections, and perspectives of the cystic fibrosis community.
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!
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 (June - August: 9 a.m. - 3 p.m. ET)