Full Text of HR0641 102nd General Assembly
HR0641 102ND GENERAL ASSEMBLY |
| | HR0641 | | LRB102 26035 LAW 35468 r |
|
| 1 | | HOUSE RESOLUTION
| 2 | | WHEREAS, The National Institutes of Health reports that | 3 | | there are nearly 7,000 diseases and conditions that affect | 4 | | fewer than 200,000 Americans, which means that they are | 5 | | considered rare; and
| 6 | | WHEREAS, While each of these diseases may affect small | 7 | | numbers of people, rare diseases as a group affect nearly 30 | 8 | | million Americans, 50 percent of whom are children; and
| 9 | | WHEREAS, Many rare diseases are serious and debilitating | 10 | | conditions that have a significant impact on the lives of | 11 | | those affected; and
| 12 | | WHEREAS, While the Food and Drug Administration has | 13 | | approved drugs and biologics for more than 1,000 rare disease | 14 | | indications, millions of Americans have rare diseases for | 15 | | which there is no approved treatment; and
| 16 | | WHEREAS, Individuals and families affected by rare | 17 | | diseases often experience problems, such as diagnosis delay, | 18 | | difficulty finding a medical expert, and lack of access to | 19 | | treatments or ancillary services; and
| 20 | | WHEREAS, While the public is familiar with some rare |
| | | HR0641 | - 2 - | LRB102 26035 LAW 35468 r |
|
| 1 | | diseases, such as muscular dystrophy and amyotrophic lateral | 2 | | sclerosis, better known as Lou Gehrig's disease, and is | 3 | | sympathetic to those affected, many patients and families | 4 | | affected by lesser-known rare diseases bear a large share of | 5 | | the burden of funding research and raising public awareness to | 6 | | support the search for treatments; and
| 7 | | WHEREAS, With nearly one in ten Americans diagnosed with a | 8 | | rare disease, thousands of Illinois residents are among those | 9 | | affected by rare diseases; those affected were given a voice | 10 | | in 2017 with the establishment in this state of the Rare | 11 | | Disease Advisory Commission; and
| 12 | | WHEREAS, The Orphan Drug Act has encouraged and promoted | 13 | | the discovery and development of biopharmaceuticals designed | 14 | | to treat and potentially cure rare diseases; and
| 15 | | WHEREAS, Many of the world's leading academic | 16 | | institutions, academic medical centers, biotech companies, and | 17 | | pharmaceutical companies that are conducting research and | 18 | | seeking cures for rare diseases are doing so in this State; | 19 | | therefore, be it
| 20 | | RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE ONE | 21 | | HUNDRED SECOND GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that | 22 | | we declare February 28, 2022 as Rare Disease Day in the State |
| | | HR0641 | - 3 - | LRB102 26035 LAW 35468 r |
|
| 1 | | of Illinois in order to raise awareness of rare diseases, | 2 | | support individuals and families who struggle with rare | 3 | | diseases, bring attention to the need for research and funding | 4 | | to support the discovery and development of therapies designed | 5 | | to treat and potentially cure rare diseases, and support the | 6 | | continued work of the Illinois Rare Disease Commission; and be | 7 | | it further
| 8 | | RESOLVED, That suitable copies of this resolution be | 9 | | presented to iBIO, Inc., Chairperson Maria Bellefeuille of the | 10 | | Illinois Rare Disease Commission, and the Department of Public | 11 | | Health.
|
|