Schedule of Topics

The Great Plains Rare Disease Summit

Schedule of Topics

8:45 a.m.
Breakfast

9:20 a.m.
Welcome

9:30-10:10 a.m.
Genetics and Rare Diseases: Working with a Genetic Counselor

10:10-10:50 a.m.
Caregiver Burnout

10:50-11:10 a.m.
Break

11:10-12:00 a.m.
Experience as a Patient and Provider

12-12:30 p.m.
Lunch

12:30-1:10 p.m.
Panel Discussion
Parents and Providers Working Together: A Diagnostic Journey

1:10-1:50 p.m.
Having a Rare Disease in a Rural Setting

1:50-2:30 p.m.
Transitioning to Adult Care

2:30-2:50 p.m.
Break

2:50-3:30 p.m.
Accessing Benefits

3:30-4:10 p.m.
Research and physician panel
Talking to Researchers

4:10-4:30 p.m.
Closing

 

 

Break Out Sessions

11:10 a.m.-12 p.m.
Accessing Therapy

1:10-1:50 p.m.
Social Media and Raising Awareness
Connecting With Others

2:50-3:30 p.m.
Getting Involved: Advocacy Organization

Register online.