Bill Text: NY K00129 | 2019-2020 | General Assembly | Introduced
Bill Title: Memorializing Governor Andrew M. Cuomo to proclaim February 28, 2019, as Rare Disease Awareness Day in the State of New York
Spectrum: Bipartisan Bill
Status: (Passed) 2019-02-28 - adopted [K00129 Detail]
Download: New_York-2019-K00129-Introduced.html
Assembly Resolution No. 129 BY: M. of A. McDonald 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 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 Andrew M. Cuomo to proclaim 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 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), 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, 2019 marks the 11th Anniversary of Rare Disease Day; this year's theme is: "Bridging Health and Social Care"; for most people living with a rare disease, as well as their family members or caregivers, the reality of daily life can be time-consuming; managing care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging; 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 a small number of people, rare diseases affect 25-30 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 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, 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, 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, Research today 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 Andrew M. Cuomo to proclaim February 28, 2019, as Rare Disease Day in the State of New York, in conjunction with the observance of National Rare Disease Day; 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.