DESIGNATING FEBRUARY 28, 2025, AS "RARE DISEASE DAY" IN THE STATE OF DELAWARE.

Legislation Document

SPONSOR:

Rep. Griffith & Sen. Poore & Rep. Romer on behalf of all Representatives & Sen. Townsend on behalf of all Senators

HOUSE OF REPRESENTATIVES

153rd GENERAL ASSEMBLY

HOUSE CONCURRENT RESOLUTION NO. 10

DESIGNATING FEBRUARY 28, 2025, 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, and only about 500 have approved treatments in the United States, according to the National Institutes of Health; 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, 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 may be 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, another example of a rare disease is Ehlers-Danlos Syndrome or “EDS”, a group of inherited disorders that affect connective tissues, primarily the skin, joints, and blood vessel walls, and may be closely linked to gastroparesis, a condition in which the stomach muscles don’t move food as they should for it to be properly digested; and

WHEREAS, thousands of Delaware residents are among those affected by rare diseases since nearly 1 in 10 Americans have rare diseases; and

WHEREAS, as of July 2023, Delaware became the 27th state to establish a Rare Disease Advisory Council through the passage of SB 55 to raise awareness and create a platform to educate the public, state agencies, and the General Assembly about rare diseases and to make policy recommendations that improve patient access to critical health care services; and

WHEREAS, the National Organization for Rare Disorders organized a nationwide observance of “Rare Disease Day” on February 29, 2024, to provide an energy and focal point that enables rare diseases advocacy work to progress on the local, national, and international levels; 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 House of Representatives of the 153rd General Assembly of the State of Delaware, the Senate concurring therein, that February 28, 2025, is recognized as “Rare Disease Day” in the State of Delaware.

SYNOPSIS

This House Concurrent Resolution recognizes February 28, 2025, as "Rare Disease Day" in Delaware.