Bill Text: NY J02355 | 2019-2020 | General Assembly | Introduced

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Bill Title: Memorializing Governor Andrew M. Cuomo to proclaim February 29, 2020, as Rare Disease Day in the State of New York

Spectrum: Slight Partisan Bill (Democrat 40-22)

Status: (Passed) 2020-01-14 - ADOPTED [J02355 Detail]

Download: New_York-2019-J02355-Introduced.html

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Senate Resolution No. 2355

BY: Senator RIVERA

        MEMORIALIZING Governor Andrew M. Cuomo to proclaim
        February  29, 2020, 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
memorialize Governor Andrew M. Cuomo to proclaim Saturday, February  29,
2020,  as  Rare  Disease  Awareness  Day  in  the  State of New York, in
conjunction with the observance of 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
insufficient,  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, 2020 marks the 11th Anniversary of Rare  Disease  Day,  and
this year's theme is "Rare is many. Rare is strong. Rare is proud."; 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
significantly  to  the general understanding of more common diseases and
conditions; 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,
therefore, be it

  RESOLVED, That this Legislative Body pause in its  deliberations  to
memorialize  Governor  Andrew M. Cuomo to proclaim February 29, 2020, as
Rare Disease Day in the State of New York; and be it further

  RESOLVED, That copies of this  Resolution,  suitably  engrossed,  be
transmitted  to  The Honorable Andrew M. Cuomo, Governor of the State of
New York; the New York State Rare Disease Alliance; and NORD.