Press Release:  Ohio Rep. Randi Clites (D-Ravenna) today (2/4/2020) announced the unanimous vote of the Ohio House Health Committee to favorably report House Bill 412, to create the Ohio Rare Disease Advisory Council. Rep. Clites and Rep. Tim Ginter (R-Salem) are joint sponsors of the bill.

“This council would provide the expertise that lawmakers need to solve the issues facing those living with a rare disease, pave the way for better healthcare policy in the state, and deliver better access to government to those living with a rare disease,” said Rep. Clites.

The bill 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.

“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.”

Ten percent of Americans live with a rare disease. Of the 7,000 known rare diseases, some 90 percent still do not have FDA-approved treatment options. 

House Bill 412 is scheduled for a House floor vote on Wednesday, February 5.

Click here to see the initial press conference announcing the Ohio Rare Disease Council.