LEGISLATIVE RESOLUTION memorializing Governor Andrew M. Cuomo to
proclaim Wednesday, February 29, 2012, as Rare Disease Day in the State
of New York

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 memori-
alize Governor Andrew M. Cuomo to proclaim Wednesday, February 29, 2012,
as Rare Disease Day in the State of New York; and
WHEREAS, This year is the 5th annual day of recognition and the theme
is "Rare but strong together"; and
WHEREAS, There are nearly 7,000 diseases and conditions considered
rare, each affecting fewer than 200,000 Americans in the United States;
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, Many rare diseases are serious and debilitating conditions
that have a significant impact on the lives of those affected; and
WHEREAS, While approximately 340 orphan drugs and biologics have been
approved for the treatment of rare diseases affecting between 11 and 14
million people according to the Food and Drug Administration, that
leaves well over 15 million Americans with rare diseases who have no
treatment specific to their disease; and
WHEREAS, Individuals and families affected by rare diseases often
experience problems such as a sense of isolation, difficulty in obtain-
ing an accurate and timely diagnosis, few treatment options, and prob-
lems related to accessing or being reimbursed for treatment; and
WHEREAS, Some rare diseases, such as "Lou Gehrig's disease" and
Huntington's disease, are relatively well-known, while many others, such
as Acromegaly, are not known at all by the public so patients and their
families must bear a large share of the burden for things such as rais-
ing funds for research; and
WHEREAS, Thousands of residents of New York State are among those
affected by rare diseases since nearly one in 10 Americans have rare
diseases; and
WHEREAS, The National Organization for Rare Disorders (NORD) is organ-
izing a nationwide observance of Rare Disease Day on the last day in the
month of February each year and patients, medical professionals,
researchers, government officials and companies developing treatments
for rare diseases are joining together to focus attention on rare
diseases as a public health issue on that day; and
WHEREAS, It is imperative that there be greater public awareness of
this serious health issue, and more must be done to increase activity at
the local, State and national levels to support the patients as well as
their families; now, therefore, be it
RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Andrew M. Cuomo to proclaim Wednesday, February 29,
2012, as Rare Disease Day in the State of New York; and be it further
RESOLVED, That a copy of this Resolution, suitably engrossed, be tran-
smitted to The Honorable Andrew M. Cuomo, Governor of the State of New
York.