2014 -- S 2402

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LC004919

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     STATE OF RHODE ISLAND

IN GENERAL ASSEMBLY

JANUARY SESSION, A.D. 2014

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S E N A T E   R E S O L U T I O N

PROCLAIMING FEBRUARY 28TH, 2014 TO BE "RARE DISEASE DAY" IN THE STATE

OF RHODE ISLAND

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

     Date Introduced: February 26, 2014

     Referred To: Recommended for Immediate Consideration

     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.

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LC004919

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