SENATE RESOLUTION 64

(By Senators Takubo, Rucker, Stollings, Beach, Lindsay, Hardesty, Cline, and Plymale)

[Introduced February 28, 2019]

Designating February 28, 2019, as Rare Disease Day at the Capitol.

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; 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, 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, 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, Residents of West Virginia are among those affected by rare diseases because nearly one in 10 Americans have rare diseases; therefore, be it

Resolved by the Senate:

That the Senate hereby designates February 28, 2019, as Rare Disease Day at the Capitol; and, be it

Further Resolved, That the Clerk is hereby directed to forward a copy of this resolution to the appropriate representatives of Rare Disease Day.