As the parent of children with cystic fibrosis, it can be challenging to know where to turn when they experience unfamiliar health issues. Here are six things I've learned from working with our CF care team and our pediatrician to keep my kids healthy.
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Beginning this March, the CF Foundation's Patient Assistance Resource Center (PARC) will help implement a new tool for the Foundation's network of 110 cystic fibrosis care centers across the U.S. to help make it easier for care center staff to work with insurers to cover CF treatment and care.
A decade of strategic efforts to improve care has played a profound role in improving the quality and length of life for people with cystic fibrosis in the United States, according to a series of reports published in the April issue of BMJ Quality & Safety (formerly the British Medical Journal).
Comedian and longtime friend of the Cystic Fibrosis Foundation, Lewis Black, brought together some of the biggest names in the entertainment business for a variety show that benefited the Cystic Fibrosis Foundation on May 5.
This morning, Vertex Pharmaceuticals announced the results from the Phase 3 clinical trials of ivacaftor (Kalydeco™) and lumacaftor (VX-809) in people with two copies of the F508del mutation.
A comprehensive, updated resource to assist the cystic fibrosis community with infection prevention and control practices is now available online. “Infection Prevention and Control Guideline for Cystic Fibrosis: 2013 Update” will also be published in the August print edition of Infection Control & Hospital Epidemiology, the official journal of the Society for Healthcare Epidemiology of America.
The Cystic Fibrosis Foundation has awarded the 2016 Impact Grants to individuals or organizations making a positive impact on the cystic fibrosis community.
Growing up with cystic fibrosis, my parents always encouraged me to take responsibility and be open and honest about my disease. That's why my number one piece of advice for parents of kids with CF is to entrust your child with small bits of responsibility at an early age so that they can take care of themselves down the road.