88R15293 CJM-D
By: Kuempel H.R. No. 443
R E S O L U T I O N
WHEREAS, There are nearly 10,000 known diseases and
conditions that are considered rare by medical authorities in the
United States, and each year, thousands of Texans are among those
whose lives are changed by these diseases; and
WHEREAS, A rare disease is defined as one that affects fewer
than 200,000 people, but even though a specific disease may afflict
only a small number of sufferers, such conditions, as a group,
affect almost 30 million Americans, or nearly one in 10 people in
our nation; and
WHEREAS, Many rare diseases are serious and debilitating,
with a significant impact on the lives of those affected and their
families, and approximately 95 percent of rare diseases have no
FDA-approved treatment; and
WHEREAS, The National Economic Burden of Rare Disease Study
in the United States estimated that the overall economic burden of
rare diseases in 2019 exceeded $966 billion; and
WHEREAS, Individuals and families who face a rare disease
often experience a sense of isolation, difficulty in getting an
accurate and timely diagnosis, few treatment options, and problems
in receiving reimbursement for treatment; moreover, those who are
diagnosed with a lesser known disorder often find that they must
bear the lion's share of the responsibility for raising awareness
as well as for raising funds for research toward a possible
treatment or cure; and
WHEREAS, Thousands of patients, family members, friends,
co-workers, medical professionals, researchers, government
officials, and companies developing treatments are pleased to join
together with patient advocacy organizations like The National
Organization for Rare Disorders (NORD), EveryLife Foundation for
Rare Diseases, and the Texas Rare Alliance as part of a nationwide
observance of Rare Disease Day to advocate for continued research
and access to diagnosis and treatment; now, therefore, be it
RESOLVED, That the House of Representatives of the 88th Texas
Legislature hereby recognize February 28, 2023, as Rare Disease Day
and encourage all Texans to learn more about this matter of serious
concern.