SPONSOR:

Sen. Hall-Long & Sen. Sokola & Rep. Baumbach

Sens. Bushweller, Ennis, Henry, Hocker, Lawson, Lopez & McDowell,

Reps. Brady, Hudson, Jaques, Keeley, Kenton, Mitchell, Paradee, Ramone, B. Short & Viola

DELAWARE STATE SENATE

148th GENERAL ASSEMBLY

SENATE CONCURRENT RESOLUTION NO. 9

DESIGNATING MARCH 19TH, 2015, AS "RARE DISEASE DAY" IN THE STATE OF DELAWARE.

Whereas, there are nearly 7,000 diseases and conditions considered rare (each affecting fewer than 200,000 Americans) in the United States, according to the National Institutes of Health (NIH); and

Whereas, while each of these diseases may affect small numbers of people, rare diseases as a group affect almost 30 million Americans; and

Whereas, many rare diseases are serious and debilitating conditions that have a significant impact on the lives of those affected; and

Whereas, while more than 450 drugs and biologics have been approved for the treatment of rare diseases according to the Food and Drug Administration (FDA), millions of Americans still have rare diseases for which there is no approved treatment; and

Whereas, individuals and families affected by rare diseases often experience problems such as diagnosis delay, difficulty finding a medical expert, and lack of access to treatments or ancillary services; and

Whereas, while the public is familiar with some rare diseases such as "Lou Gehrig's disease" and sympathetic to those affected, many patients and families affected by less widely known rare diseases bear a large share of the burden of funding research and raising public awareness to support the search for treatments; and

Whereas, thousands of Delaware residents are among those affected by rare diseases since nearly one in 10 Americans have rare diseases; and

Whereas, the National Organization for Rare Disorders (NORD) is organizing a nationwide observance of "Rare Disease Day" on March 19^th, 2015; and

Whereas, thousands of patients and caregivers, medical professionals, researchers, companies developing orphan products to treat people with rare diseases, and others in the State of Delaware will participate in that observance;

NOW, THEREFORE:

BE IT RESOLVED by the Senate of the 148^th General Assembly of the State of Delaware, the House of Representatives concurring therein, that March 19^th, 2015, shall be recognized as "Rare Disease Day" in the State of Delaware.