Rare Disease Day 2024

Friday, March 1, 2024, 3:00 PM - 6:00 PM,  Nationwide Children's Hospital Education Center

Community Program Attendance (5.00 hours), Non-Accredited (5.00 hours), Non-Physician Attendance (5.00 hours)

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. 

Agenda 

2 p.m.  Exhibits Open

3 p.m. Welcome and Opening Remark's

3:15 p.m. Keynote Address : The Patient-Researcher Partnership in Discovery of a Rare Disease 
Helen Su, MD, PhD
Chief, Human Immunological Diseases Section
National Institutes of Health (NIH)

  Whitney Ward 

  First  patient to be diagnosed with MAGIs Syndrome, a name she  came up with!                    

4 p.m. Grab Snack and Go to Workshop Sessions
Workshop Session Options (for adults only) 
A. Participation in Research- Melanie Kohlheim
B. Complex Medical Issues/ Rukshana Ahmed, MD
C. Transition for teens, young adults and their parents/Vidya Sivaraman, MD and Melissa Argraves, MD 

4:45 p.m. Patient Panel/ Dawn Allain,  MS, LGC Moderator

5:30 p.m. Advocacy Panel/ Elizabeth Varga, MS, CGC Moderator

  Jim Kuhn, Sarcoidosis Foundation

  Meghann Rice, Partners for Kids

  Bureau of Childrens with Medical Handicaps

  Maggie Burch,   MSW, LISW-S Nationwide Children's Hospital Social Work Dept. 

6 p.m. Closing Remarks

Questions?

E-mail us at [email protected]

Registration Cost: Free and open to the public. Pre-registration to attend is required.

Cancellation Policy 

Cancellations are accepted until two weeks before the program. Refunds will be made minus 30% for administrative costs. After this time, no refunds will be given. 
Nationwide Children’s Hospital reserves the right to cancel or postpone this program if necessary; in the event of cancellation, course fees will be fully refunded.

The Nationwide Children's Hospital® adheres to ACCME Criteria, Standards and Policies regarding industry support of continuing medical education. Disclosure of faculty and their commercial relationships will be made prior to the activity.