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.
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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.
The Patient Registry is an invaluable tool for researchers conducting observational studies about people with CF in the U.S. About 50,000 individuals have been followed in the Registry since its inception in 1986; many of them have been included for over 20 years.
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.”
Ever wonder about an aspect of cystic fibrosis that you would love someone to research? Find out how you can submit a question in our first community-driven research project.
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.
The event, held at the U.S. Capitol Visitor Center, aimed to educate members of Congress on the impact of the proposed rule to expand short-term insurance plans on people with serious and chronic health conditions.