State Reps. Randi Clites (D-Ravenna) and Tim Ginter (R-Salem) will hold a press conference TOMORROW, Wednesday, Nov. 13, at 11:00 a.m. at the Statehouse Senate Press Room to introduce bipartisan legislation that would create the Ohio Rare Disease Advisory Council.


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.


“The Rare Disease Advisory Council will help address the unique challenges rare disease patients face every day of their lives by providing a forum to analyze the needs of the rare disease community and make recommendations on how to improve public policy,” said Rep. Ginter. “It is a great step toward ensuring the patients and their families have a voice in government as well as serve as a way we can leverage the unique resources we have in Ohio that can potentially serve as an example for the nation.”


Who: State Rep. Randi Clites (D-Ravenna); State Rep. Tim Ginter (R-Salem); Charlene York- National Organization for Rare Disorders- Ohio Rare Action Network; Kelly Maynard- Little Hercules Foundation  


What: Press conference to announce bill creating Rare Disease Advisory Council


When: Tomorrow, Wednesday, Nov. 13, 2019 at 11 a.m.


Where: Warren G. Harding Press Room, Ohio Statehouse, 1 Capitol Square, Columbus, OH 43215

 
 
 
  
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