February 28, 2019: Rare Disease Day

WHEREAS, there are nearly 7,000 diseases and conditions considered rare (each affecting fewer than 200,000 Americans) in the United States, according to the National Institutes of Health (NIH); and,

WHEREAS, while each of these diseases may affect small numbers of people, rare diseases as a group affect almost 30 million Americans; and,

WHEREAS, many rare diseases are serious and debilitating conditions that have a significant impact on the lives of those affected; and,

WHEREAS, while more than 450 drugs and biologics have been approved for the treatment of rare diseases according to the Food and Drug Administration (FDA), millions of Americans still have rare diseases for which there is no approved treatment; and,

WHEREAS, individuals and families affected by rare diseases often experience problems such as diagnosis delay, difficulty finding a medical expert, and lack of access to treatments or ancillary services; and,

WHEREAS, while the public is familiar with some rare diseases such as “Lou Gehrig’s disease” and sympathetic to those affected, many patients and families affected by less widely known rare diseases bear a large share of the burden of funding research and raising public awareness to support the search for treatments; and,

WHEREAS, thousands of residents of Michigan are among those affected by rare diseases, since nearly one in 10 Americans have rare diseases; and,

WHEREAS, the National Organization for Rare Disorders (NORD) is organizing a nationwide observance of Rare Disease Day on February 28, 2019; and,

WHEREAS, thousands of patients and caregivers, medical professionals, researchers, companies developing orphan products to treat people with rare diseases, and others in the state of Michigan will participate in that observance;

NOW, THEREFORE, I, Gretchen Whitmer, governor of Michigan, do hereby proclaim February 28, 2019, as Rare Disease Day in Michigan.