RARE Daily

West Virginia Establishes Rare Disease Advisory Panel

March 30, 2020

Rare Daily Staff

West Virginia Governor Jim Justice last week signed legislation creating a Rare Disease Advisory panel, making the Mountain State the 12th state to form such a body.

The 12-member panel is charged with coordinating statewide efforts to study the incidence of rare disease, advise the legislature and state agencies on rare disease matters, identify priorities, and make policy recommendations.

It is also authorized to develop strategies to raise public awareness about rare disease, make recommendations for best practices for healthcare providers to recognize and treat rare disease, and report on its activities annually.

It is not clear whether the state will provide any funding to the council. The legislation authorizes the council to seek funding in the form of grants and gifts. That, however, does not preclude the legislature from appropriating funds to support its mission.

Heidi Ross, director of state policy for the National Organization for Rare Disorders in a March 12 letter, urged governor Justice to sign the legislation.

“The West Virginia Rare Disease Advisory Council will give rare disease patients a unified voice in the state government by providing them a forum to make recommendations to elected officials and other state leaders about pressing health care issues,” she wrote. “From providing information on the provider-patient relationship to identifying best practices, the council will coordinate with legislators and other government leaders to improve public policy for the entire state.”

Alabama, Connecticut, Illinois, Kentucky, Minnesota, Missouri, New Hampshire, New York, Nevada, North Carolina, and Pennsylvania have all established similar state level rare disease advisory councils.

Photo: West Virginia Governor Jim Justice

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