Klobuchar serves as the Co-Chair of the Congressional Rare Disease Caucus

WASHINGTON – U.S. Senator Amy Klobuchar (D-MN), Co-Chair of the Congressional Rare Disease Caucus, joined a bipartisan group of her colleagues led by Senators Sherrod Brown (D-OH) and John Barrasso (R-WY) in announcing the passage of their Senate resolution designating February 28, 2022 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 improve access to and develop new treatments, diagnoses, and cures for these diseases. The House companion resolution is led by Rep. André Carson (D-IN).

“95 percent of the 7,000 known rare diseases still do not have an FDA-approved treatment, which means millions of Americans lack access to effective care,” said Sen. Klobuchar. “This bipartisan resolution recognizes the importance of improving diagnosis and access to safe, effective, and affordable therapies for rare disease patients. As co-chair of the Congressional Rare Disease Caucus, I’ll keep working to address the needs of rare disease patients and their loved ones.”

“It’s difficult for those with rare diseases to find treatment when options are limited and the nearest specialist is hundreds of miles away,” said Sen. Brown. “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,” said Sen. Barrasso. “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.”

“Due to a lack of treatment options or exorbitant costs, millions of Americans living with rare diseases struggle to receive quality, affordable health care,” said Sen. Booker. “I’ve been proud to work in a bipartisan manner to address this gap for rare diseases including sickle cell disease, but additional work remains to be done. This bipartisan resolution recognizes the need for new cures and calls for a federal commitment to improve access for those living with rare diseases, many of whom are children.”

“On behalf of the US rare disease community and the National Organization for Rare Disorders (NORD), we are very grateful to Senator Sherrod Brown and Senator John Barrasso for once again championing the Senate resolution officially recognizing February 28th as Rare Disease Day. Rare Disease Day is a fantastic opportunity to raise awareness and help build a more equitable future in which all Americans, including the estimated 25-30 million Americans with a rare disease, have access to the care they need to thrive,” said Peter Saltonstall, President and CEO, NORD.

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. More than 7,000 rare diseases affect approximately 1 in 10 individuals in the United States, many of whom are children.

In addition to designating February 28 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.

As co-chair of the Congressional Rare Disease Caucus, Klobuchar has long fought to improve patients’ access to safe and effective therapies and care. In March 2021, she led the bipartisan, bicameral Speeding Therapy Access Today (STAT) Act, which promotes government coordination to advance science-based policies and ensure the intended patient populations ultimately receive access to approved therapies. Klobuchar and Senator Roger Wicker (R-MS) also introduced the bipartisan BENEFIT Act in February 2021. This legislation would provide patients and advocates the ability to play a larger role in the Food and Drug Administration’s (FDA) benefit-risk framework for drug approval.

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

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

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