WASHINGTON, D.C. – Today, the Senate passed U.S. Sen. Sherrod Brown’s (D-OH) resolution designating February 28, 2018 as “National Rare Disease Day.” Brown’s 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.
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.
“It’s tough for anyone getting medical treatment for a disease. But it’s even more difficult for those with rare diseases to find treatment when options are limited and the nearest specialist is hundreds of miles away,” Brown said. “National Rare Disease Awareness Day is a call to raise awareness for and support Ohioans living with rare diseases or disorders.”
Brown’s resolution marks the 35th Anniversary of the National Organization for Rare Disorders (NORD), a non-profit organization that provides services to and advocates on behalf of patients dealing with rare diseases. It also recognizes the importance of both the U.S. Food and Drug Administration (FDA) and the National Institutes of Health (NIH) in establishing special offices to advocate for rare disease research and treatments.
Full text of Brown’s resolution can be found here.