Bill Text: WV SR43 | 2023 | Regular Session | Introduced
Bill Title: Designating February 27, 2023, as Rare Disease Awareness Day at Legislature
Spectrum: Partisan Bill (Republican 4-0)
Status: (Passed) 2023-02-28 - Completed legislative action [SR43 Detail]
Download: West_Virginia-2023-SR43-Introduced.html
SENATE RESOLUTION 43
(By Senator Rucker)
[Introduced February 27, 2023]
Designating February 28, 2023, as Rare Disease Awareness Day at the Legislature.
Whereas, The National Institute of Health (NIH) reports that there are approximately
7,000 diseases and conditions that are identified as rare with only 500 having approved treatments; and
Whereas, According to the Food and Drug Administration more than 450 drugs and biologics are approved for the treatment of rare diseases, as millions of Americans still suffer from a rare disease for which there is no approved treatment; and
Whereas, Nearly 200,000 Americans are affected by a rare disease, with many of these rare diseases being complex, chronic, and debilitating, having a significant impact on their lives; and
Whereas, Individuals and families affected by rare diseases can experience problems such as diagnosis delay, difficulty in finding a medical expert, lack of access to treatment, or paying more for treatments than a common disease; and
Whereas, Most rare diseases are genetic with two-thirds affecting children, many of whom will struggle to live past the age of five; and
Whereas, In 2020, Senate Bill 269 passed legislation creating a West Virginia Rare Disease Advisory Council to advise state agencies on research, diagnosis, treatment, and education relating to rare diseases; therefore, be it
Resolved by the Senate:
That the Senate hereby designates February 28, 2023, as Rare Disease Day Awareness at the Legislature.
