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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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.”
A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.
Sr. Vice President for Policy and Community Affairs Mary Dwight reflects on the passage of the Ensuring Access to Clinical Trials Act (EACT) and what it means for the community.
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.
When I ran into a particularly difficult situation with my last job, the “d” word entered my lexicon for the first time: disability. While my life doesn't look like I thought it would, I have come to accept where I am and gained a new perspective on work and life.
Going back to work was hard. So. Very. Hard. But with the mounting costs of cystic fibrosis, I didn't have a choice. The decision had been made for me.
Like many of my millennial compatriots, I was booted from my parents' health plan when I turned 26. While my friends were shrugging health insurance off as just another growing pain of their 20s, I was panicking.
If you receive financial assistance from Vertex GPS™ for a modulator therapy (e.g., Trikafta®, Symdeko®, Orkambi®, or Kalydeco®), you may be impacted by changes Vertex has made to its copay assistance program. The following tips can help you understand how you may be impacted and what next steps may be available to you.
Last week I travelled to D.C. to serve on a panel discussing the recent developments in precision medicine. I've got to say, it was pretty neat.