Bill Text: DE SCR7 | 2023-2024 | 152nd General Assembly | Draft
Bill Title: Designating February 28, 2023, As "rare Disease Day" In The State Of Delaware.
Spectrum: Partisan Bill (Democrat 3-0)
Status: (Engrossed - Dead) 2023-01-24 - Passed In House by Voice Vote [SCR7 Detail]
Download: Delaware-2023-SCR7-Draft.html
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SPONSOR: |
Sen. Townsend on behalf of all Senators & Rep. Baumbach & Rep. Griffith on behalf of all Representatives |
DELAWARE STATE SENATE
152nd GENERAL ASSEMBLY
SENATE CONCURRENT RESOLUTION NO. 7
DESIGNATING FEBRUARY 28, 2023, AS "RARE DISEASE DAY" IN THE STATE OF DELAWARE.
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, one example of a rare disease is Lissencephaly, a condition that is characterized by agyria or pachygyria, which means absence or incomplete development, respectively, of the brain gyri or convolution, causing the brain's surface to appear unusually smooth with an estimated less than 1,000 individuals diagnosed worldwide and many others undiagnosed; and
WHEREAS, thousands of Delaware residents 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) organized a nationwide observance of “Rare Disease Day” on February 28, 2023; 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 Delaware will participate in that observance.
NOW, THEREFORE:
BE IT RESOLVED by the Senate of the 152 nd General Assembly of the State of Delaware, the House of Representatives concurring therein, that February 28, 2023, is recognized as “Rare Disease Day” in the State of Delaware.
SYNOPSIS
This Senate Concurrent Resolution recognizes February 28, 2023, as "Rare Disease Day" in Delaware.
Author: Senator Townsend
