Bill Text: NY J01572 | 2023-2024 | General Assembly | Introduced


Bill Title: Memorializing Governor Kathy Hochul to proclaim February 29, 2024, as Rare Disease Day in the State of New York

Spectrum: Slight Partisan Bill (Democrat 42-21)

Status: (Passed) 2024-01-09 - ADOPTED [J01572 Detail]

Download: New_York-2023-J01572-Introduced.html

Senate Resolution No. 1572

BY: Senator PERSAUD

        MEMORIALIZING  Governor  Kathy  Hochul to proclaim
        February 29, 2024, as Rare Disease 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  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
memorialize Governor Kathy Hochul to proclaim February 29, 2024, 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  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, 2024 marks the 16th Anniversary of Rare Disease Day in  the
United  States; in 2008, the first Rare Disease Day was held on February
29th, a 'rare' date which happens only once every four years; ever since
then, Rare Disease Day has taken place on the last day  of  February,  a
month known for having a 'rare' number of days; and

  WHEREAS,  Rare Disease Day was established for the reason, according
to  the  European  Organization  for  Rare  Diseases  (EURORDIS),   that
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, in 2009, 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
25-30 million Americans; and

  WHEREAS, There are 7,000 known rare diseases affecting approximately
25-30  million  Americans  and  approximately 1-in-10 individuals in New
York State has a rare disease; and

  WHEREAS, Of these 7,000 known  rare  diseases,  more  than  90%  are
without FDA approved treatment; and

  WHEREAS,  Many rare diseases and diseases of unmet need are genetic,
and 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  due  to  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 takes between five to seven years on average to  receive
an accurate diagnosis; and

  WHEREAS, Biopharmaceutical research companies, academic researchers,
patient groups, and others are applying the growing understanding of the
causes  of  rare diseases to speed the development of new treatments for
patients; the Orphan Drug Act of 1983 has been and continues  to  be  an
important force in driving treatment innovation for rare diseases; and

  WHEREAS,  Today,  there  is more hope than ever before with over 560
medicines in development for patients with rare diseases;  medicines  in
development  include 151 for rare cancers and 82 for rare blood cancers,
accounting for 40 percent of all rare disease medicines in  development;
148 for genetic disorders, including cystic fibrosis and spinal muscular
atrophy;  38  for  neurological disorders, including amyotrophic lateral
sclerosis (ALS), Stiff-Person Syndrome, and seizures; 31 for  infectious
diseases,  including  rare  bacterial  infections  and hepatitis; 25 for
autoimmune  diseases,  including   systemic   sclerosis   and   juvenile
arthritis; and

  WHEREAS,  Currently,  research  has led to powerful new gene-editing
techniques holding promise for cures for blood disorders (such as Sickle
Cell  Disease,  Thalassemia,  Hemophilia),  Cancer,   Blindness,   Aids,
Muscular Dystrophy, Cystic Fibrosis, and Huntington's disease; and

  WHEREAS, These treatment options and medicines in development attack
the  root  of  the cause for these patients that had few or no treatment
options before; and

  WHEREAS, Advances in DNA sequencing have led to  the  identification
of the genetic cause of several rare disease, which can potentially lead
to  better  understanding  of  the  disease  and development of targeted
therapies; 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 Kathy Hochul to proclaim February 29, 2024, as Rare
Disease Day in the State of New York, in conjunction with the observance
of National Rare Disease Day; and be it further


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