Raising the Bar for CF Care
To Travel…
Posted on January 31, 2008. Filed under: Caregiver Support, Living in Chronicity, Raising the Bar for CF Care, cystic fibrosis | Tags: cystic fibrosis, hospital, iv antibiotics, travel |
… or not? That was the question.
When you “live in chronicity” (or parent someone who does), you exist somewhere between those people who can make plans and keep them and those forced to mark every “commitment” down in pencil. For example, I recently took a trip out West to visit another CF care [...]
Must be doing something right…
Posted on January 30, 2008. Filed under: Raising the Bar for CF Care, Social Issues, The Science, cystic fibrosis | Tags: Advocacy, CFF, Cure, Cytic Fibrosis |
These are exciting times indeed!
The CFF wins again… sort of. It’s no small feat for the Cystic Fibrosis Foundation’s care center network to be recognized by The National Institutes of Health as a model for the delivery of care for those with a chronic disease. Even more surprising for some was the bold [...]
Long time coming…
Posted on January 9, 2008. Filed under: Raising the Bar for CF Care | Tags: chronic, cystic fibrosis, illness, Project DOCC |
Not being one to leave well enough alone, I’m constantly on the lookout for new and innovative ways to implement family centered care practices into our healthcare settings. Taking a page from the Project DOCC program, I began to contemplate the possibility of taking it to the next step: instead of addressing a [...]
Read Full Post | Make a Comment ( 2 so far )Interesting Comparisons
Posted on December 20, 2007. Filed under: Raising the Bar for CF Care |
It comes as no surprise that Germany has been on the benchmarking bandwagon with regard to CF care and their numbers are consistent with those that we find in the US. You can read here about the similarities.
But what about the countries who have little access to specialized care for those who desperately need it? [...]
Traveling Parent
Posted on December 10, 2007. Filed under: Raising the Bar for CF Care |
I’ve been “involved” in the world of CF for over four years now. In that time I’ve assembled a broad range of experiences that have helped to shape and define what I believe my role should be in this journey. In addition to my “regular” duties as a primary caregiver, pharmacist, nurse, doctor, [...]
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