Senate Passes Brown, Barrasso Resolution Honoring Rare Disease Day

Press Release

The Senate passed U.S. Sens. Sherrod Brown (D-OH) and John Barrasso's (R-WY) resolution designating February 28, 2021 as "Rare Disease Day." The senators' resolution recognizes the importance of raising awareness around and providing support for Americans living with rare diseases and disorders, while calling for a national and global commitment to improving access to and developing new treatments, diagnoses and cures for these diseases.

"It's difficult for those with rare diseases to find treatment when options are limited and the nearest specialist is hundreds of miles away," Brown said. "Rare Disease Awareness Day is a call to raise awareness and support Ohioans living with rare diseases or disorders."

"As a doctor, I know the importance of helping people with rare diseases," Barrasso said. "These patients face challenges getting the care and treatments they need. This is why I am proud to help lead this bipartisan effort recognizing Rare Disease Day."

While each rare disease affects a small number of patients, the cumulative effect is significant as many of these diseases are serious and can be life-threatening. With nearly 7,000 rare diseases affecting 30 million people in the United States, children account for nearly half of rare disease patients.

In addition to designating the 28th as Rare Disease Day, the resolution recognizes the importance of improving awareness, encouraging accurate and early diagnosis, and supporting efforts to develop effective treatments, diagnostics, and cures for rare diseases and disorders. The resolution highlights efforts passed in the 116th Congress, including a four year extension of the Rare Pediatric Disease Priority Review Voucher program, which incentivizes development of therapies for children with rare diseases and the Advancing Care for Exceptional Kids Act, which improves access to patient-centered health care for children with complex and rare medical conditions in Medicaid.

Joining Brown and Barrasso on the resolution were Senators Richard Blumenthal (D-CT), Tim Scott (R-SC), Amy Klobuchar (D-MN), Roger Wicker (R-MS), Ed Markey (D-MA), and Cory Booker (D-NJ).

Full text of the senators' resolution can be found here.

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