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Ohio State Ambassador Needed
Interested in learning about the State Ambassador Program and how to apply?
Click Here 

What's Happening Now?

Cleveland, Ohio Rare Disease Day Event
Thursday, February 29, 2024 from 9:00 a.m. – 1:00 p.m.
 MetroHealth Medical Center (Main Campus), 2500 MetroHealth Drive, Cleveland, OH 44109

The event will be held in Rammelkamp Atrium and The Alfred F. Connors, Jr.,
MD Learning Center- R170.
Please park in the P4 visitor parking garage, located on MetroHealth Drive.
Event attendee parking will be validated.

Please join members of the rare disease community at this important event to discuss the challenges people living with rare diseases and disorders face, and learn how you can make a difference in the lives of those impacted here in our great state of Ohio.

Along with NORD, this year’s event is also hosted and sponsored by The MetroHealth System. The event hosted by volunteers working with the National Organization for Rare Disorders (NORD) and its Rare Action Network in honor of Rare Disease Day.

The event will include a series of presentations addressing the challenges surrounding the diagnosis and treatment of rare diseases and the lack of approved treatment options. The program will also feature stories from the patient perspective, highlight advocacy and legislative efforts, and provide opportunities for networking and the sharing of best practices. There is no cost to attend this event.

Pre-event registration is now closed. We welcome you to register onsite on event day.
Registration will run from 8:00 a.m. until 8:45 a.m. on Thursday, February 29.

*Rare Disease Day Cleveland event is pending CME approval.

Rare Disease Day at Nationwide Children’s
Friday, March 1, 2024 2:00 p.m. – 8:00 p.m.
Nationwide Children’s Hospital Education Center
575 S 18th St., Columbus, Ohio 43205


More than 300 million people in the world are affected by a rare disease. Rare is everywhere. As a Rare Disease Center of Excellence, Nationwide Children’s is a trusted medical home where patients with rare diseases and their families come to find answers.

Join us for the 6th Annual Rare Diseases Day at Nationwide Children’s to raise awareness of rare diseases and support our patients and families affected by them.


Would you like to volunteer to assist in hosting a local community awareness event? Do you have an opportunity for Ohio’s RareAction Network to attend your event? Contact the NORD Rare Action team today and learn more. Please check back regularly for news of upcoming events and activities in New Hampshire.

In order to make meaningful change in the lives of rare disease patients and their families in the state of Ohio, we need you! Become active with the RareAction Network by joining and utilizing the resources available on this website to take action and create change.

State Information

COVID-19 Resources & Information

State Resource Page

Ohio Department of Health has created this helpful resource website in response to COVID-19.
Please visit:

Cincinnati Area COVID-19 Resource Guide CLICK HERE

Additional resources Cincinnati area CLICK HERE

COVID-19 Relief Resources
NORD COVID-19 Rare Disease Premium and Medical Assistance Program
Contact: 203.242.0497 Email: [email protected]

Additional COVID-19 Relief Assistance Programs
I Stay Home For Rare
The purpose of the I Stay Home For Rare Fund is to provide quick access to emergency monies needed by applicant families and individuals living with rare disease during the COVID-19 pandemic.

Jillian Froment, Director

Ohio Department of Insurance
50 West Town Street Third Floor, Suite 300
Columbus, OH 43215


In order to get the issues that affect your life addressed, connect with your state representative by using the tool on our website.

Click Here

Online Complaint Submission


State Health Insurance Consumer Assistance Program


Ombudsman Email: [email protected].
Ombudsman Website

NORD Links


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