New York K 938: Memorializing Governor Andrew M. Cuomo to proclaim October 2020, as Spina Bifida Awareness Month in the State of New York

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K00938 Summary:

BILL NOK00938 

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SAME ASNo Same As

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SPONSORMcDonald

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COSPNSR

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MLTSPNSRBailey, Bendett, Brabenec, Buttenschon, Chang, Colton, Cook, Cunningham, DeStefano, Fitzpatrick,
 Kelles, Lavine, Levenberg, Lupardo, Ra, Ramos, Santabarbara, Seawright, Sempolinski, Slater,
 Smullen, Walsh, Woerner

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Go to top K00938 Actions:

BILL NOK00938 

&nbsp

02/06/2026referred to calendar

02/09/2026adopted

Go to topK00938 Committee&nbspVotes:

Go to topK00938 Floor&nbspVotes:

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

Go to topK00938 Text:

Assembly Resolution No. 938

BY: M. of A. McDonald

 MEMORIALIZING Governor Kathy Hochul to proclaim
 February 28, 2026, 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 28, 2026, 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, The first Rare Disease Day was held in 2008 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; 1 in 10 New Yorkers suffer from a rare disease;
and

 WHEREAS, There are nearly 10,000 diseases and conditions considered
rare; it is paramount to stress the importance of early detection of
said diseases, as well as work to minimize the severity of their effects
through proper funding of research and public awareness; and

 WHEREAS, Of these 10,000 rare diseases, more than 95% are without
FDA approved treatment; 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 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 typically takes between six to eight 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 treat