New York K 395: Honoring John A. Berdinka upon the occasion of being named the Westhampton Free Library Hometown Hero on May 18, 2019

Bill Text

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K00395 Summary:

BILL NOK00395 

&nbsp

SAME ASNo Same As

&nbsp

SPONSORLemondes

&nbsp

COSPNSR

&nbsp

MLTSPNSRButtenschon, Santabarbara

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Go to top K00395 Actions:

BILL NOK00395 

&nbsp

04/29/2025referred to calendar

04/30/2025adopted

Go to topK00395 Committee&nbspVotes:

Go to topK00395 Floor&nbspVotes:

There are no Assembly votes for this bill in this legislative session.

Go to topK00395 Text:

Assembly Resolution No. 395

BY: M. of A. Lemondes

 MEMORIALIZING Governor Kathy Hochul to proclaim
 April 29, 2025, 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, 2025, 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, 2025, 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.

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