J3287

Memorializing Governor Andrew M. Cuomo to proclaim February 29, 2016, as Rare Disease Awareness Day in the State of New York

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J3287


LEGISLATIVE RESOLUTION memorializing Governor Andrew M. Cuomo to
proclaim February 29, 2016, as Rare Disease Awareness Day in the State
of New York

WHEREAS, It is the custom of this Legislative Body to recognize official
days set aside to increase awareness of serious issues which 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 February 29, 2016, as Rare
Disease Awareness Day in the State of New York, in conjunction with
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
diseases of unmet need, few of which have cures or specific drugs to
treat symptoms, and are often not diagnosed for many years; 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 and diseases of unmet need is insuffi-
cient, as are the social networks to support individuals with rare
diseases and diseases of unmet need and their families; and
WHEREAS, One year later, Rare Disease Day went global as the National
Organization of 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, In 2013, in recognition of the needs of patients with rare
diseases, Albany Medical Center and College established the Albany
Medical Center's Rare Disease Forum which was the genesis of the New
York State Rare Disease Alliance, whose purpose is to promote faster
diagnosis of rare diseases, research into therapies and cures, and to
foster wider public recognition of public health problems affecting 30
million Americans; and
WHEREAS, There are nearly 7,000 diseases and conditions considered
rare, each year affecting approximately 200,000 Americans; and
WHEREAS, Of these 7,000 rare diseases, more than 80 percent are
considered ultra rare, affecting less than a few thousand Americans; and
WHEREAS, While each of these diseases and disorders may affect small
numbers of people, rare diseases affect more than 30 million Americans;
and
WHEREAS, Since many rare diseases and diseases of unmet need are
genetic, tragically, approximately 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 vitally important because it frequently adds signif-
icantly to the general understanding of more common diseases and condi-
tions; 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, options
generally considered more expensive than those for common diseases; and
WHEREAS, It is imperative that there be greater public awareness of
rare diseases and diseases of unmet need, and more must be done to
increase activity at the local, state and national levels to support
those afflicted as well as their families and caregivers; now, there-
fore, be it
RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Andrew M. Cuomo to proclaim February 29, 2016, as

Rare Disease Day in the State of New York, in conjunction with National
Rare Disease Day; and be it further
RESOLVED, That copies of this Resolution, suitably engrossed, be tran-
smitted to The Honorable Andrew M. Cuomo, Governor of the State of New
York; the New York State Rare Disease Alliance; and NORD.

actions

  • 13 / Jan / 2016
    • REFERRED TO FINANCE
  • 21 / Jan / 2016
    • REPORTED TO CALENDAR FOR CONSIDERATION
  • 21 / Jan / 2016
    • ADOPTED

Resolution Details

Law Section:
Resolutions, Legislative

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