Bill Text: NY K02061 | 2023-2024 | General Assembly | Introduced

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

Spectrum: Partisan Bill (Republican 1-0)

Status: (Passed) 2024-04-18 - adopted [K02061 Detail]

Download: New_York-2023-K02061-Introduced.html

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Assembly Resolution No. 2061

BY: M. of A. Lemondes

        MEMORIALIZING  Governor  Kathy  Hochul to proclaim
        April 29, 2024, as Undiagnosed Rare Disease  Day  in
        the State of New York

  WHEREAS,  It  is  the  custom  of this Legislative Body to recognize
official months that are set aside  to  increase  awareness  of  serious
health 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,  this  Legislative  Body  hereby  memorializes
Governor  Kathy  Hochul  to proclaim April 29, 2024, as Undiagnosed Rare
Disease Day in the State of New York, in conjunction with the observance
of National Undiagnosed Rare Disease Day; and

  WHEREAS, In 2016, the  Rare  and  Undiagnosed  Network  started  the
awareness campaign for an annual Undiagnosed Rare Disease Day to be held
on April 29th of each year; and

  WHEREAS,  The  main  objective of this day is to raise awareness for
the undiagnosed rare-disease community among the  general  public  about
the  emotional,  physical  and financial impact on the lives of patients
and their families; and

  WHEREAS, Undiagnosed Rare Disease Day also celebrates  those  living
with  an  undiagnosed disease and their families, as well as to remember
the ones we have lost; and

  WHEREAS, As many as 25 million Americans,  about  1  in  13  people,
suffer  from  a  rare,  undiagnosed  condition; since 80% of undiagnosed
diseases have identified genetic origins,  it  is  imperative  to  raise
awareness  about  the  importance  of  genomics  for undiagnosed disease
patients; and

  WHEREAS, Undiagnosed diseases are particularly  troubling  from  the
perspective  that  they  leave  patients, parents, family and caregivers
bewildered in answering simple questions  like  why  and  how  did  this
happen and what can we do about it; and

  WHEREAS,  This prognosis creates the additional challenge of what to
do with no precedent to fall back on as well as  those  impacted  having
limited  or  no  advocacy  simply  because of the lack of definition and
prevalence; and

  WHEREAS, In the case of a young girl, her medical fragility  was  so
stark  from multiple unrelated congenital problems that her medical team
had no real sense  of  what  to  do  other  than  treat  each  condition
individually; and

  WHEREAS,  Undiagnosed  disease  can  place  a  tremendous burden and
uncertainty on primary  caregivers,  usually  parents,  and  the  direct
impacts  on  other  young children, which may be extremely high at times
but ultimately engenders seeds of empathy that the communities of  these

children,  when  they  become  adults,  will  benefit from greatly; now,
therefore, be it

  RESOLVED,  That  this Legislative Body pause in its deliberations to
memorialize Governor  Kathy  Hochul  to  proclaim  April  29,  2024,  as
Undiagnosed 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 Kathy Hochul, Governor of the State of  New
York, and to the Rare and Undiagnosed Network.