Although not part of my son's “official” care team, our local pharmacist plays a key role in his cystic fibrosis care.
Researchers are exploring treatments that will keep people with cystic fibrosis as healthy as possible until a cure is found. In the first plenary at the NACFC, two CF scientists explain the progress of current research.
This year at the 30th Annual North American Cystic Fibrosis Conference in Orlando we have three sessions just for the online cystic fibrosis community.
Each time we meet, I am reminded that quality improvement in CF care cannot happen without the insights of people with CF and their families.
There was a clear message in today's second plenary at NACFC: no matter what role you play -- physician, scientist, person living with CF, parent, fundraiser, regulator -- it is going to take a tremendous team effort to advance new therapies as fast as possible and eventually find a cure for CF.
It can be difficult to find time for daily CF treatments in your already jam-packed lives, but your respiratory therapist can help.
Sometimes, being the “squeaky wheel” is the only way to make a positive change.
All my life I wanted an answer to why I was so sick. Then I got it, in the form of a CF diagnosis.
When our son was diagnosed with CF, the clinic director sat with me for hours answering my questions. Since that day, I have wanted to bottle up his advice and become a voice of encouragement for new CF parents.
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.