January 17, 2020
 
Representative P. Scott Lipps
District 62 
Columbus, OH 43215 

RE: HB 412 Establish Rare Disease Advisory Council
 
Dear Chairman Lipps:
 
My name is Tiffany Sammons and I am Ohio's Community Engagement Liaison for NORD as well as a parent of a child with a rare disease.
I fully support the HB 412 bill to establish a rare disease advisory council. I believe this will help ensure that those affected by rare diseases in the state of Ohio get the care and resources that are needed and deserved. It will help to eliminate exclusions for these individuals as well as lessen the time it takes to recieve bennefits.
This issue is extremely important to me as I have a two year old son with a rare disease called Coffin-Siris Syndrome. Getting insurance coverage and resources for him has been an immense challege as well as time consuming. This also contributed to the length of time it took to get a true diagnosis. He was 21 months old when we received a definitive diagnosis after many fights and challenges to receive proper testing. I am very hopeful this bill passes and together we can change the outcome for so many families facing similar struggles.Thank you for your time and support.
Sincerely,
Tiffany Sammons

513.913.9800
4549 Tealtown Rd.
Batavia, OH 45103