Today, state Reps. Randi Clites (D-Ravenna) and Tim Ginter (R-Salem) held a Statehouse press conference to introduce bipartisan legislation to 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.”
Organizations supporting efforts to create the Ohio Rare Disease Advisory Council include the American Heart Association, the Little Hercules Foundation, the National Organization for Rare Diseases (NORD), the NORD Rare Action Network, the American Academy of Pediatrics- Ohio Chapter, the Scleroderma Foundation- Ohio Chapter, the Ohio Children’s Hospital Association, the Ohio Hematology Oncology Society, the Ohio Renal Association, the Ohio State University Wexner Medical Center, and the Ohio Sickle Cell and Health Association.