Assembly Resolution No. 124

BY: M. of A. McDonald

MEMORIALIZING Governor Kathy Hochul to proclaim
February 28, 2023, 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, 2023, 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, 2023 marks the 15th Anniversary of Rare Disease Day in the
United States; 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 7,000 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 7,000 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 treatment innovation for rare diseases; 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, In 2020, legislation creating a Rare Disease Advisory Work
Group was signed into law; this Work Group will be composed of
individuals with expertise in rare disease who will focus on best
practices that will: improve awareness of rare diseases; and evaluate
barriers to treatment including financial barriers on access to care;
and

WHEREAS, In 2020, legislation creating a Rare Disease Advisory Work
Group was signed into law; this Work Group will be composed of
individuals with expertise in rare disease who will focus on improving
awareness of rare diseases and evaluating barriers to treatment,
including financial barriers; 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) 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, 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 28, 2023, as 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; the New York State Rare Disease Alliance; and NORD.