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

Pamela Gavin, CEO of the National Organization for Rare Disorders (NORD), opens the day with a warm welcome and event overview.

SPEAKERS:

• Pamela Gavin, Chief Executive Officer, NORD

Speaker TBA

Living with a rare disease can be isolating. This session explores ways to build a supportive community and meaningful connections within the rare community.

SPEAKERS:

• Alison Leeds, Connecticut Ambassador, NORD Rare Action Network®
• Montrez Lucas, Associate Director of Patient Navigation, NephCure

Explore NORD’s resources, programs, and advocacy opportunities, from grassroots organizing to legislative action.

SPEAKERS:

• Leah Barber, Director of Grassroots Advocacy, NORD
• Mason Barrett, Policy Analyst, NORD

Enjoy lunch with the opportunity to join topic-focused discussions and connect with others navigating similar journeys.

Table topics for discussion will include:

• Creative Storytelling: How To Share Your Story
• IEPs, 504 plans, SSI, and Disability Navigation
• “Welcome To Holland:” Coping, Grieving, and Resiliency
• Transitioning to Adulthood
• Coordinating Your Care Team
• Navigating Insurance Barriers

In this session, we will explore ways technology can be used to improve care, alleviate burdens, and aid you in navigating your rare journey.

Speakers TBA

Genetic testing doesn’t stop at diagnosis. Learn why it remains essential for treatment, family planning, and long-term care decisions.

SPEAKERS:

• Dawn Laney, Emory University, Division of Medical Genetics
• Amanda Singleton, Director, Patient Advocacy and Biopharma, GeneDx

Hear a heartfelt message about the strength of our community and the power of shared stories in the rare disease journey.

SPEAKER:

• Tiffany Sammons, Education Programs Manager, NORD and Rare Mom

Join us for a brief networking reception as we conclude our program.