CF Foundation President Discusses Patient Involvement in Research at Congressional Hearing

Patrícia Silva, PhD avatar

by Patrícia Silva, PhD |

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Cystic Fibrosis Foundation

Cystic Fibrosis FoundationRobert J. Beall, President and CEO of the Cystic Fibrosis Foundation, was invited to a hearing on the theme “21st Century Cures: Incorporating the Patient Perspective,” at the House of Representatives’ Energy and Commerce Committee. The CF Foundation was one of the four patient advocacy institutions selected to testify.

Beall highlighted the breakthroughs recently made in the drug development field, recommending that Congress help advance the treatment of rare diseases, such as CF. “Congress should make sure patients have a seat at the table, because no one understands a disease better than the people who live and fight it every day,” he said, as he discussed the importance of involving patients in the treatment development process.

The main purpose of the 21th Century Cures hearing was the creation of accelerator policies that could improve the discovery, development, and delivery of treatments and speed biomedical innovation. The Energy and Commerce Committee asked for the help of industry, patients, researchers, government agencies and other stakeholders during the event in order to understand what are the best way to accelerate the process.

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In addition to the CF Foundation, the House of Representatives’ Energy and the Commerce Committee also invited representatives from the American Cancer Society, Parent Project Muscular Dystrophy, the American Cancer Society and the National Organization for Rare Disorders. Janet Woodcock, M.D., Director of the U.S. Food and Drug Administration’s Center for Drug Evaluation and Research was also a panelist.

The 21st Century Cures was co-sponsored the House Energy and Commerce Committee Chairman Fred Upton and the Representative Diana DeGette.