Sponsored by:
Senator JEFF VAN DREW
District 1 (Cape May, Atlantic and Cumberland)
SYNOPSIS
Designates February 28 of each year as "Rare Disease Awareness Day."
CURRENT VERSION OF TEXT
As introduced.
A Joint Resolution designating February 28 of each year as "Rare Disease Awareness Day" in New Jersey.
Whereas, There are nearly 7,000 diseases and conditions that each affect fewer than 200,000 Americans and are, therefore, considered to be rare diseases; 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 nearly 330 orphan drugs and biologics have been approved for the treatment of rare diseases and are available to assist between 11 and 14 million people with those diseases, according to the federal Food and Drug Administration, it is still the case that over 15 million Americans with rare diseases have no treatment specific to their disease; and
Whereas, Persons affected by rare diseases and their families often encounter a variety of problems such as a sense of isolation and difficulty in 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, may others are largely unknown to the public and patients and their families bear a large share of the burden of raising money to fund needed research on these diseases; and
Whereas, In 2009, the National Organization for Rare Disorders organized a nationwide observance of Rare Disease Day on February 28; and Governor Corzine issued a proclamation to recognize that observance in New Jersey; now, therefore,
Be It Resolved by the Senate and General Assembly of the State of New Jersey:
1. February 28 of each year is designated as "Rare Disease Awareness Day" in New Jersey.
2. The Governor shall annually issue a proclamation calling upon public officials and the citizens of the State to observe February 28 of each year with appropriate activities and programs.
3. This joint resolution shall take effect immediately.
STATEMENT
This joint resolution designates February 28 of each year as "Rare Disease Awareness Day" in New Jersey and directs the Governor to annually issue a proclamation calling upon public officials and the citizens of the State to observe this day with appropriate activities and programs.