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CF Community Blog

The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.

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How I Use the CF Patient Registry to Inform My Care

I used the Cystic Fibrosis Foundation Patient Registry Annual Data Report to ask my care teams questions to more effectively manage my CF. You can, too.

Feb. 7, 2019 | 5 min read


Highlights from the 2017 CF Foundation Patient Registry

The latest trends in the health of people with cystic fibrosis who participate in the Patient Registry have been published in the 2017 Patient Registry Highlights Report.

June 1, 2018 | 4 min read


Coming to Expect More From My Life

Growing up, the term “life expectancy” was always with me, affecting my choices and expectations. Over time, I learned to tune it out and live my life my way.

Nov. 17, 2017 | 5 min read


Survival Trending Upward But What Does This Really Mean?

Reflecting the continued momentum we're making in the fight against cystic fibrosis, the latest Patient Registry data show steady gains in survival for people with CF. With this good news comes a lot of excitement, along with some questions.

Nov. 16, 2017 | 4 min read


Vote for the Questions You Want Answered by the Patient Registry

Members of the cystic fibrosis community can have an even greater say in research when they vote for the Insight CF questions they most want answered. Readers have until June 21 to vote.

June 7, 2017 | 4 min read


Understanding the Differences in Survival Between Canadians and Americans With CF

An analysis of cystic fibrosis patient registry data from the United States and Canada found that Canadians were living about 10 years longer than Americans. Two of the study authors discuss the findings and offer some possible reasons for the results.

March 13, 2017 | 5 min read