Assembly Resolution No. 349

BY: M. of A. Lemondes

MEMORIALIZING Governor Kathy Hochul to proclaim
April 29, 2023, 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, 2023, 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, 2023, 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.