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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 Coordinate My Care With 2 Different CF Clinics

When it comes to my cystic fibrosis care, some might say that my situation is a bit unique. Although having not one -- but two -- CF care teams can be challenging, I strongly believe that has made me a better, smarter, and more engaged patient.

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| 5 min read
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5 Things We Heard About Partnering in CF Care

The Partnerships for Sustaining Daily Care (PSDC) team had the opportunity to hear from people with cystic fibrosis, families and care teams at five Family Education Days at care centers across the country. Here's what we heard.

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| 5 min read
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Social Worker Sees Health Reform's Impact in CF Work

According to social worker Kim Reno, removing critical health care protections in current law would be devastating for people with cystic fibrosis and their families.

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| 2 min read
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The Patient Registry: Where We’ve Been, Where We’re Going

In the third plenary, Dr. Wayne Morgan talked about the connection between cystic fibrosis care and the Patient Registry, and introduced a new way for people with CF, along with their families, to help shape the research conducted using the Registry.

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| 4 min read
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Teaching as We Learn: Visiting a CF Care Center with Policymakers

A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.

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| 4 min read
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The Experience of Care Survey: Your Voice Can Make a Difference

CF care centers have worked hard to improve health outcomes. A new initiative seeks to improve the quality of our experiences at care centers. 

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| 5 min read