The Cystic Fibrosis Foundation made a strategic commitment to develop a multi-pronged approach to help people with cystic fibrosis stick with their treatment plans called Partnerships for Sustaining Daily Care (PSDC). Learn more about this initiative and how you can get involved.
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Because cystic fibrosis is a complex disease, it requires a team approach with you or your child at the center. Your CF care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Teams of dedicated health care professionals in a nationwide network of more than 130 Cystic Fibrosis Foundation-accredited care centers partner with people with CF and their families to provide expert care and specialized disease management.
Although not part of my son's “official” care team, our local pharmacist plays a key role in his cystic fibrosis care.
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.
March on the Hill brings a mix of new and familiar faces to Capitol Hill every year. The connections and stories that our advocates share with their elected officials are making lasting impressions that impact the entire CF community. And as this event has grown, so too has the cystic fibrosis story.
It can be difficult to find time for daily CF treatments in your already jam-packed lives, but your respiratory therapist can help.
One of the questions that we ask our representatives during the Foundation's signature advocacy event, March on the Hill, is to join the Congressional CF Caucus. Here is my story of what happened when I (accidently) asked a senator to join that caucus.
A few weeks ago, while contemplating the trip I was about to take to Washington D.C. to join my fellow advocates for the Cystic Fibrosis Foundation's tenth annual March on the Hill, I challenged myself to "think big." So I sat down in front of the computer and wrote a letter to the President of the United States.
Sometimes, being the “squeaky wheel” is the only way to make a positive change.