As the mother of a child with CF and volunteer for the CF Foundation, I know first-hand the extraordinary things that Dr. Bob Beall has done for our community, and I am grateful for the legacy of hope that he leaves behind.
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Yesterday, the Cystic Fibrosis Foundation met with HHS Secretary Tom Price and seven other patient advocacy groups to discuss drug pricing and the needs of the CF community. President Trump has identified drug pricing as a top priority, and this meeting was the start of a listening tour by the Secretary.
On March 20, the Cystic Fibrosis Foundation and 86 other organizations called on Congress to protect Medicaid, a critical source of coverage for people in the cystic fibrosis community.
Creative use of technology can help build a more connected community. Read on to learn about the Cystic Fibrosis Foundation's innovative efforts to include more people with cystic fibrosis.
Read how Blake Leyers helps put a face on this disease by sharing her brother's story.
I can say without hesitation that the cystic fibrosis online community is unlike any I've ever seen. In my new role, I am excited to see the very engaged CF community in action. I can't wait to communicate with everyone, especially those in the online community, and see where you'll take us next.
This week, House committees released legislation to repeal and replace the Affordable Care Act. The Cystic Fibrosis Foundation issued a statement consistent with our ongoing work to promote policies to help ensure that people with cystic fibrosis have access to high-quality, specialized care and adequate affordable insurance.
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The Cystic Fibrosis Foundation awarded U.S. Sen. Susan Collins (R-Maine) the Breath of Life Legislator Award on Nov. 3 for her leadership in ensuring that people with cystic fibrosis have access to the adequate, affordable care they need to live full and healthy lives.