Last month, Senator Chuck Grassley (R-Iowa) and I partnered to create the Cystic Fibrosis Caucus in the U.S. Senate. We are working toward a day when CF stands for “Cured Forever.”
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CF Foundation-accredited care centers play an important role in research. They collect information on the health status of their patients with CF who agree to participate, and report that data to the CF Foundation Patient Registry. The information is available in aggregate to the CF community each year through the Data Report, the Highlights Report, and the Care Center Finder.
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.
A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.
Dana Handler, an intern with the Foundation's advocacy team, recounts her experience and explains her renewed confidence that we'll find a cure for cystic fibrosis.
A top priority for the next administration and Congress is health care reform. As an adult living with cystic fibrosis, I've been wondering what this will mean for me, our community and our ability to access high-quality, affordable 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.
A mother worries that her son may lose access to crucial cystic fibrosis medication if proposed health care reforms are carried out.
As our country prepares for the transition to a new presidential administration and congressional session, the CF Foundation is hard at work to understand what the changes in our political leadership mean for people with cystic fibrosis. Our interest is in supporting you.
Learn four tips for telling your cystic fibrosis story so people are listening, engaged and inspired to take action.