Agenda

Friday, May 8, 2026

10 AM - 10:30 AM

Check-in and Networking

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

10:30 AM - 10:50 AM

Opening Keynote Address

10:50 AM - 11:35 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.

11:40 AM - 12 PM

Networking & Exhibiting

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

12:05 PM - 12:50 PM

Tips for Accessing the Resources and Services You Need

Living with a rare disease does not come with a manual or how-to guide. In this session, we will share tips to access the resources and services you need that are available in your local area.

12:50 PM - 1 PM

Closing Remarks

1 PM - 2 PM

Lunch & Conclude

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