Senate Resolution No. 189

BY: Senator RIVERA

MEMORIALIZING Governor Andrew M. Cuomo to proclaim
February 28, 2019, as Rare Disease Awareness 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 which
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 Andrew M. Cuomo to proclaim Thursday, February 28,
2019, 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 held on the last
day of February every year 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, In 2008, Rare Disease Day was established for the reason,
according to the European Organization for Rare Diseases (EURORDIS),
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, 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, 2019 marks the 10th Anniversary of Rare Disease Day, and
this year's theme is "Research"; over the last few decades, clinical
research has made remarkable strides in increasing funding and awareness
of serious, rare conditions such as bone cancer, multiple myeloma, and
familial Alzheimer's, to name a few of the 7,000 known rare diseases;
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 30
million Americans; and

WHEREAS, There are nearly 7,000 diseases and conditions considered
rare, each year affecting approximately 200,000 Americans; and

WHEREAS, Of these 7,000 rare diseases, more than 80 percent are
considered ultra rare, affecting less than a few thousand Americans; and

WHEREAS, While each of these diseases and disorders may affect small
numbers of people, rare diseases affect more than 30 million Americans;
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 because 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 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 Andrew M. Cuomo to proclaim February 28, 2019, 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 Andrew M. Cuomo, Governor of the State of
New York; the New York State Rare Disease Alliance; and NORD.