There is no consensus on the best model of care for individuals with CF to manage the non-pulmonary complications that persist after lung transplant. This position paper outlines two models of post-transplant care to accomplish optimal CF care after transplant.
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Advocacy is impactful at all ages, but the term can sound intimidating. It implies effort, time, commitment, politics, and publicity. As a 30-year-old with cystic fibrosis, I am currently an active member of the CF community, but I was not always aware of the benefits, power, and impact of advocacy.
These consensus statement recommendations were developed to help guide optimal care for children and adults with CF with otolaryngologic (ear, nose, and throat) disease.
Sharing your CF story is one of the most powerful things you can do, but that can be hard for some of us. If you want to use your voice but struggle with how to get started, here are three things that helped me.
The legislation would impact the health care coverage of millions of Americans, including people living with cystic fibrosis.
Eight Patient/Consumer Groups Urge Senate to Start Over
Twelve patient/consumer groups urge senate to reject the bill.
Responding to the U.S. Department of Health and Human Services final rule on short-term, limited-duration insurance plans, the Cystic Fibrosis Foundation joined 26 other nonpartisan patient and consumer groups to voice concern that these plans will split the market and jeopardize access to affordable, adequate health care for people living with pre-existing conditions.
Nutritional support is a vital component of care for patients with cystic fibrosis. These recommendations cover caloric intake, dosing for pancreatic enzyme replacement therapy, and monitoring growth in childhood and weight status in patients of all ages.