Designates last day of February of each year as "Rare Disease Awareness Day" in New Jersey.

SJR88

SENATE JOINT RESOLUTION

No. 88

STATE OF NEW JERSEY

222nd LEGISLATURE

�

INTRODUCED FEBRUARY 19, 2026

Sponsored by:

Senator� ANTHONY M. BUCCO

District 25 (Morris and Passaic)

SYNOPSIS

���� Designates last day of February of each year as �Rare
Disease Awareness Day� in New Jersey.�

CURRENT VERSION OF TEXT

���� As introduced.

��

A Joint
Resolution
designating
the last day
of February of each year as �Rare Disease
Awareness

Day� in New Jersey.

Whereas,

The National Institutes of Health defines the term �rare disease� to mean any
disease or condition that affects fewer than 200,000 persons in the United
States; and

Whereas,

The National Institutes of Health also calculates that there are almost 7,000
rare diseases occurring in the United States; and

Whereas,

While each of these diseases or conditions affects only a small number of
persons, the total number of Americans affected by rare diseases is nearly 30
million; and

Whereas,

Many of these diseases result in serious and debilitating symptoms that have a
major impact on the lives of those people who suffer from them and their
families; and

Whereas,

Although approximately 420 orphan drugs and biologics have been approved for
the treatment of rare diseases and are available to assist up to 14 million
Americans with those diseases, according to the United States Food and Drug
Administration, 15 million or more Americans with rare diseases may have no
treatment specific to their disease; and

Whereas,

Persons affected by rare diseases and their families often encounter a variety
of challenges such as overcoming a sense of isolation, obtaining accurate and
timely diagnoses, finding effective treatment options, or accessing or being
reimbursed for treatment; and

Whereas,

While some rare diseases, such as amyotrophic lateral sclerosis (ALS) and
Huntington�s disease, are relatively well known, many others are largely
unknown to the public.� Patients and their families bear a large share of the
burden of promoting public awareness of those diseases and raising funds for
needed research; and

Whereas,

Thousands of New Jersey residents are among those affected by rare diseases, as
nearly one in 10 Americans have rare diseases.� Rare diseases also affect many
individuals who support those patients, including family members, friends,
caregivers, physicians and other medical professionals, providers of social
services, and researchers seeking to develop safe and effective treatments; and

Whereas,

The National Organization for Rare Disorders (NORD) is organizing a nationwide
observance of Rare Disease Day on the last day of February of each year, and on
that day patients, medical professionals, researchers, government officials,
and companies developing treatments for rare diseases will join together to
focus attention on rare diseases as a public health issue; now, therefore,

����
Be It
Resolved
by the Senate and General Assembly of
the State of New Jersey:

���� 1.��� The last day of February
of each year shall be designated as �Rare Disease Awareness Day� in New
Jersey to raise public awareness of rare diseases, to encourage support for
patients and families affected by rare diseases, and to promote further
research into rare diseases and their treatment.

���� 2.��� The Governor is
requested to annually issue a proclamation calling upon public officials and
the citizens of this State to observe �Rare Disease Awareness Day� with
appropriate activities and programs.

���� 3.��� This joint resolution
shall take effect immediately.

STATEMENT

���� This joint resolution would
declare the last day of February of each year as �Rare Disease Awareness Day�
in New Jersey to raise public awareness of rare diseases, to encourage support
for patients and families affected by rare diseases, and to promote further
research into rare diseases and their treatment.

���� The National Institutes of
Health defines �rare disease� as any disease or condition that affects fewer
than 200,000 persons in the United States.� There are almost 7,000 rare
diseases, affecting nearly 30 million Americans and their families.� Many rare
diseases are serious and debilitating conditions that have significant impacts
on the lives of those affected.� Patients with rare diseases often face
challenges such as overcoming a sense of isolation, obtaining accurate and
timely diagnoses, finding effective treatment options, or accessing or being
reimbursed for treatment.

���� Rare diseases include genetic
diseases such as
cystic
fibrosis, muscular dystrophy,
Huntington�s disease, and amyotrophic
lateral sclerosis (ALS, also known as Lou Gehrig�s disease), as well as rare
cancers, auto-immune diseases, congenital malformations, and toxic and
infectious diseases.� Although some rare diseases are relatively well known,
many other rare diseases are unfamiliar to the public, and patients and their
families must bear a large share of the burden of promoting awareness and
raising funds to support needed research.� Raising public awareness of rare
diseases as an important public health issue will help patients with rare
diseases and their families obtain more timely and accurate information about
their conditions, reduce the isolation of patients and their families, and
promote policies and practices that facilitate further research into rare
diseases and their treatment.