RARE Daily

Ohio Advances Legislation to Create Rare Disease Advisory Council

December 3, 2020

Rare Daily Staff

The Ohio House of Representatives unanimously passed legislation that would create the Ohio Rare Disease Advisory Council.

Rep. Randi Clites (D-Ravenna) and Rep. Tim Ginter (R-Salem) jointly sponsored the bipartisan legislation.

“In passing this legislation today, the Ohio House paves the way for providing the expertise that lawmakers need to solve the issues facing those living with a rare disease,” said Rep. Clites. “This act will create better healthcare policy in the state and deliver better access to government to those living with a rare disease.”

The legislation would bring together medical researchers, physicians, nurses, patients, lawmakers and state officials to begin addressing many of the issues facing those living with rare diseases.

The legislation details the make up of the commission and calls for the director of health to publish a report within three years to document the incidence of rare diseases in Ohio with a breakdown by gender, rare, ethnicity, socioeconomic status, and type of insurance coverage. The report is to be published every two years after the first one.

“As legislators, we work for you, and creating a dedicated council focused on the lives and experiences of patients and families living with rare diseases will give us the opportunity to improve care in our state,” said Rep. Clites. “Better health outcomes for Ohioans with a rare disease means better healthcare for all Ohioans.”

The bill passed out of the House and now heads to the Ohio Senate for further consideration.


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