Agenda

Friday, May 15, 2026

9 AM - 9:30 AM

Check-in and Networking

Kick off the day with coffee and a chance to connect with fellow rare disease patients, families and caregivers.

9:30 AM - 9:50 AM

Opening Keynote Address

9:50 AM - 10:35 AM

Overcoming Insurance Barriers

If you are impacted by a rare disease, you are likely spending countless hours navigating health insurance. In this session, we will discuss common insurance barriers faced by patients and caregivers living with a rare disease, and tips to overcome them. This panel incorporates several unique perspectives for every step in your journey that you won’t want to miss!

10:40 AM - 11 AM

Networking & Exhibiting

Enjoy the opportunity to connect with others, navigating similar journeys and explore our exhibitor section.

11:05 AM - 11:50 AM

Innovative Approaches to Improving Your Rare Disease Care

In an era of scientific and technological advances, rare disease care is changing every day. Join us for a robust panel discussion diving into different approaches to navigate and improve your rare care throughout each step of your journey.

11:50 AM - 12 PM

Closing Remarks

12 PM - 1 PM

Lunch & Conclude

We hope you’ve enjoyed the program! Grab some lunch and feel free to continue networking.