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.
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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.
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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.
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Even though CF is a rare disease, there are plenty of other parents who've been right where you are.
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Even during COVID, there are lots of events you can attend to get support and learn more about CF.
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The CF Community Blog is all about sharing the experiences, reflections, and perspectives of the cystic fibrosis community.
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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
(1-844-266-7277)
Mon - Thu, 9 am - 7 pm ET
Fri, 9 am - 5 pm ET