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.
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Chad Riedy, an adult with cystic fibrosis, served as a witness on Wednesday before the House of Representatives' Education & Labor Committee at a hearing on the threats faced by workers with pre-existing conditions.
One hundred fifty advocates, backed by more than 5,000 connections from an additional 1,600 cystic fibrosis advocates across the country rallied behind protections for people with pre-existing conditions, like CF, during the Cystic Fibrosis Foundation's 13th annual March on the Hill.
Yesterday, President Donald J. Trump signed the Right to Try bill into law. The House approved the bill last week and the Senate passed it last summer.
Today, the U.S. Senate released its version of the health care reform bill, titled the Better Care Reconciliation Act, and in response, the Cystic Fibrosis Foundation affirmed its opposition to the legislation.
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.”
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.
The package of tax reforms expected to be signed into law includes several provisions that will impact some people with cystic fibrosis.
A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.