Although not part of my son's “official” care team, our local pharmacist plays a key role in his cystic fibrosis care.
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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.
When my 8-year-old daughter with CF found out that the disease is potentially fatal, I was grateful for her optimistic views on life and death. But deep down, I was saddened with the thought of a cure being so far away that I wouldn't be around to see it. Today, my fears have dwindled.
It can be difficult to find time for daily CF treatments in your already jam-packed lives, but your respiratory therapist can help.
Galapagos and Cystic Fibrosis Foundation Therapeutics Sign €1.3 million* Agreement
Cystic Fibrosis Foundation Therapeutics to Provide Alnylam with $1.5 Million in Funding for Discovery Efforts
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.