Paul participates in Great Strides, advocates on the Hill and has even launched a CF fundraiser. Oh, and he's only 18.
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Ever wondered what it takes for a potential cystic fibrosis drug to become approved by the U.S. Food and Drug Administration? Here's an explanation of the four phases of clinical research.
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.
Read how Blake Leyers helps put a face on this disease by sharing her brother's story.
Earlier this month, we learned that the new CF drug Orkambi was approved by the FDA. This was such an exciting, memorable and emotional day for everyone in the CF community. We heard from many who were thrilled about the potential for this drug to help people with CF and also heard from those who would not benefit from this breakthrough. Following are some reactions from those this impacts the most: people with CF and their loved ones.
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.
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.
I was thrilled to learn earlier this month that Emily Kramer-Golinkoff, a young woman living with cystic fibrosis, would be honored by the White House as a “Champion of Change” for her work to advance the field of personalized medicine.