HR0792 100TH GENERAL ASSEMBLY

HR0792 LRB100 18702 MST 33934 r

HOUSE RESOLUTION

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, 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, Residents of Illinois are among those affected by rare diseases because 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, 2018; therefore, be it

RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE ONE HUNDREDTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we declare February 28, 2018 as Rare Disease Day in the State of Illinois; and be it further

RESOLVED, That a suitable copy of this resolution be presented to the National Organization for Rare Disorders.