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Introduced Version House Concurrent Resolution 15 History

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HOUSE CONCURRENT RESOLUTION 15

(By Delegates Pack, J., and Rohrbach)

[Introduced February 26, 2021]

 

Recognizing the last day of February every year as Rare Disease Day to bring awareness to various rare diseases and the need to continue to fund research and find a treatment.

Whereas, Rare diseases are defined as any disease, disorder, illness or condition affecting fewer than 200,000 Americans; and

Whereas, 80 percent of rare diseases are genetically based; and

Whereas, Families and private foundations provide about three percent of all medical research funding in the United States of America; and

Whereas, 7,000 rare diseases exist, and less than 500 have approved treatments by the Food and Drug Administration; and

Whereas, Only five percent of all rare diseases currently have approved treatments; and

Whereas, 90 percent of health care providers must treat the majority of rare disease patients with non-Food and Drug Administration approved drugs; and

Whereas, One in every 10 Americans has a rare disease and approximately 30 million Americans have a serious, lifelong condition; and

Whereas, Of the 30 million Americans with serious, lifelong conditions and rare diseases, approximately half are found in children; and

Whereas, Many rare diseases result in premature death of infants and young children or are fatal in early adulthood; and

Whereas, If every person with a serious, lifelong condition and rare disease held hand, they would circle the globe one and a half times; therefore, be it;

Resolved by the Legislature of West Virginia:

That the last day in February of every year be recognized as Rare Disease Day to bring awareness to the necessity of conducting and funding research for treatments of rare diseases; and, be it

Further Resolved, That the Clerk of the House of Delegates forward a copy of this resolution to the Governor.

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