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

Living with a rare disease or caring for someone with a rare disease can impact every part of your life. For many, there are no breaks, no days off, and no respite. Appointments, treatments, symptoms, and uncertainty can affect relationships, family routines, work, school, and the ability to plan for the future. This panel will explore how patients and caregivers navigate everyday realities of rare disease while finding ways to stay connected to people, activities, and moments that matter most.

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

Research is essential to understanding rare diseases, improving care, and developing new treatments, yet it can be challenging for patients and families to find research opportunities that are a good fit for them. During this session, panelists will provide education on different types of research, how patients and caregivers can identify meaningful research opportunities, and how to evaluate whether a research opportunity is a good fit for your needs and goals.

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