HR0653 103RD GENERAL ASSEMBLY

HR0653 LRB103 36810 ECR 66921 r

HOUSE RESOLUTION

WHEREAS, The National Institutes of Health reports that there are nearly 7,000 diseases and conditions that affect fewer than 200,000 Americans, which means that they are considered rare; and

WHEREAS, While each of these diseases may affect small numbers of people, rare diseases as a group affect nearly 30 million Americans, 50% of whom are children; and

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

WHEREAS, While the Food and Drug Administration has approved drugs and biologics for more than 1,000 rare disease indications, millions of Americans 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 a lack of access to treatments or ancillary services; and

WHEREAS, While the public is familiar with some rare diseases, such as muscular dystrophy and amyotrophic lateral sclerosis (Lou Gehrig's disease), and is sympathetic to those affected, many patients and families affected by lesser-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, With nearly one in ten Americans diagnosed with a rare disease, thousands of Illinois residents are among those affected; these people were given a voice in 2017 with the establishment in this State of the Rare Disease Advisory Commission; and

WHEREAS, The Orphan Drug Act has encouraged and promoted the discovery and development of biopharmaceuticals designed to treat and potentially cure rare diseases; and

WHEREAS, Many of the world's leading academic institutions, academic medical centers, biotech companies, and pharmaceutical companies that are conducting research and seeking cures for rare diseases are doing so in this State; therefore, be it

RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE ONE HUNDRED THIRD GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we declare March 6, 2024 as Rare Disease Day in the State of Illinois in order to raise awareness of rare diseases, support individuals and families who struggle with rare diseases, bring attention to the need for research and funding to support the discovery and development of therapies designed to treat and potentially cure rare diseases, and support the continued work of the Illinois Rare Disease Commission; and be it further

RESOLVED, That suitable copies of this resolution be presented to Illinois Biotechnology Innovation Organization, Chairperson Maria Pollock of the Illinois Rare Disease Commission, and the Department of Public Health.