Senate Resolution No. 100
BY: Senator PERSAUD
MEMORIALIZING Governor Kathy Hochul to proclaim
February 28, 2025, 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, 2025, 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 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, composed of individuals with
expertise in rare disease, focused on best practices that will: improve
awareness of rare diseases; and evaluate barriers to treatment including
financial barriers on access to care; and the Rare Disease Advisory Work
Group recommendations are contained in a final report shared with the
Legislature in September 2023; and
WHEREAS, In 2024, legislation was introduced that would establish a
permanent rare disease advisory council to identify best practices,
raise awareness regarding rare diseases, evaluate barriers to access to
care, and to make recommendations to the legislature and the governor;
and
WHEREAS, Today, there is more hope than ever before with close to
800 medicines in development for patients with rare diseases; medicines
in development include 168 for rare cancers and 120 for rare blood
cancers, accounting for 35 percent of all rare disease medicines in
development; 192 for genetic disorders, including cystic fibrosis and
spinal muscular atrophy; 56 for neurological disorders, including
amyotrophic lateral sclerosis (ALS) and seizures; 36 for infectious
diseases, including rare bacterial infections and hepatitis; 51 for
autoimmune diseases, including systemic sclerosis and juvenile
arthritis; 54 for blood disorders, including sickle cell disease and
hemophilia; 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, 2025, 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; The Wadsworth Center -
New York State Newborn Screening Program, and NORD.
