LEGISLATIVE RESOLUTION recognizing February 28, 2013, as National Rare
Disease Day

WHEREAS, It is the custom of this Legislative Body to recognize official
days that are set aside to increase awareness of serious issues that
affect the lives of citizens of New York State; and
WHEREAS, Attendant to such concern, and in full accord with its long-
standing traditions, it is the sense of this Legislative Body to recog-
nize February 28, 2013, as National Rare Disease Day; and
WHEREAS, National Rare Disease Day is an observance held on the last
day of February every year to raise awareness of rare diseases and to
improve access to treatment and medical representation for individuals
with rare diseases and their families; and
WHEREAS, In 2008, Rare Disease Day was established for the reason,
according to the European Organization for Rare Diseases (EURORDIS),
treatment for many rare diseases is insufficient, as are the social
networks to support individuals with rare diseases and their families;
and
WHEREAS, One year later, Rare Disease Day went global as the National
Organization for Rare Disorders (NORD) mobilized 200 rare disease
patient advocacy organizations in the United States in an effort to
coordinate activities and better promote the day; and
WHEREAS, There are nearly 7,000 diseases and conditions considered
rare, each affecting fewer than 200,000 Americans; and
WHEREAS, Of these 7,000 rare diseases, more than 80 percent of them
are considered ultra rare, affecting less than a few thousand Americans;
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, Since many rare diseases are genetic, tragically, approxi-
mately half the people affected by rare diseases in the United States
are children; and
WHEREAS, Research on rare diseases, which are serious and often life-
threatening, is important because it frequently adds significantly to
the general understanding of more common diseases; and
WHEREAS, People suffering from rare diseases typically experience
difficulty in obtaining a timely, accurate diagnosis, finding physicians
or treatment centers and experience limited treatment options and those
options are generally more expensive than those for common diseases; and
WHEREAS, It is imperative that there be greater public awareness of
rare diseases, and more must be done to increase activity at the State,
local and national levels to support those afflicted as well as their
families; now, therefore, be it
RESOLVED, That this Legislative Body pause in its deliberations to
recognize February 28, 2013, as National Rare Disease Day.