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.