2014 -- S 2402

Enacted 02/26/14


S E N A T E   R E S O L U T I O N


Introduced By: Senators Doyle, Nesselbush, Paiva Weed, Lombardi, and Crowley

Date Introduced: February 26, 2014



WHEREAS, In 2008, the first annual Rare Disease Day was organized to raise awareness and draw attention to rare diseases as an important public health issue.  By 2013, more than 70 countries participated in the observance of this day; and 

WHEREAS, A rare disease, also referred to as an orphan disease, is any disorder that affects a small percentage of the population.  There are nearly 7,000 diseases that are considered rare, with each one affecting fewer than 200,000 Americans; and 

WHEREAS, Nearly 30 million Americans currently live with and are affected by a rare disease; and

WHEREAS; About 80 percent of rare diseases are genetic in origin and it is estimated that about half of all rare diseases affect children; and 

WHEREAS, While some rare diseases, such as Lou Gehrig's disease (ALS), are fairly well known, many others are not.  Many of these orphan diseases are almost completely unknown, have virtually no treatments available, and are not even being studied by any medical researchers; and

WHEREAS, Many rare diseases are serious, chronic, and debilitating.  Many are life-threatening and many are deadly; and

WHEREAS, By supporting policies and practices that promote innovative research and the development of new treatments, we can reduce mortality, provide access to higher standards of care, help break the isolation of the people living with rare diseases, and give more survivors the ability to live independently and have a better quality of life and; now, therefore be it

RESOLVED, That this Senate of the State of Rhode Island and Providence Plantations hereby commemorates "Rare Disease Day" on February 28, 2014.  We furthermore urge patients, patient organizations, health professionals, researchers, drug developers, public health authorities and the citizens of the state to join together to focus on finding treatments, offering hope, and "show you care about rare"; and be it further

RESOLVED, That the Secretary of State be and hereby is authorized and directed to transmit a duly certified copy of this resolution to the Rhode Island Rare Disease Foundation.