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Introduced Version House Concurrent Resolution 132 History

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HOUSE CONCURRENT RESOLUTION 132

(By Delegates Rohrbach, Cowles, Maynard, Walters and Westfall)

[Introduced April 7, 2017]

 

Requesting the Joint Committee on Government and Finance to study the feasibility of the creation of an “Advisory Council on Rare Diseases”.

Whereas, Rare disease is defined as one in ten Americans or ten percent of the U.S. population are living with a rare disease. Approximately fifty percent of the people affected by a rare disease are children and eighty percent of rare diseases are genetic in origin, and thus present throughout a person’s life; and

Whereas, The advisory councils intent would be to improve the lives of millions of people with one of the seven thousand devastating rare diseases by developing a unique collaborative partnership between patients, providers, scientists, agencies and industry; and

Whereas, The advisory council would advise on coordinating statewide efforts for the study on the incidence of rare diseases within the state and the status of the rare disease community

Whereas, The advisory council shall also ensure the citizens of West Virginia by investigating and recommending changes to existing structures or policies within the state that could better serve West Virginians and their families, care givers, medical providers, researchers, therapeutics concerning rare diseases; therefore, be it

Resolved by the Legislature of West Virginia:

That the Joint Committee on Government and Finance is hereby requested to study the feasibility of creating an advisory council on rare diseases; and, be it

Further Resolved, That the Joint Committee on Government and Finance report to the regular session of the Legislature, 2018, on findings, conclusions and recommendations, together with drafts of any legislation necessary to effectuate its recommendations; and, be it

Further Resolved, That the expenses necessary to conduct this study, prepare a report and draft necessary legislation be paid from legislative appropriations to the Joint Committee on Government and Finance.

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