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

Kelly Esperias, Chief Strategy & Operations Officer of the National Organization for Rare Disorders (NORD), opens the day with a warm welcome and event overview.

SPEAKER:

• Kelly Esperias, EdD, MBA, CFRE, Chief Strategy and Operations Officer, NORD

Dr. Jill C. Flanagan and Tamekia Parence share their impactful story about their relationship and how it has helped improve the health of Tamekia’s son, Carl.

SPEAKERS:

• Jill C. Flanagan, MD, FAAOS, Pediatric Orthopedic and Limb Reconstruction Surgeon, Co Medical Director – Limb Difference Program, Children’s Physician Group – Orthopedics and Sports Medicine, Children’s Healthcare of Atlanta
• Tamekia Parence, Patient Advocate, Caregiver, Mother
• Carl Mumford III, Patient, Advocate, Son

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

MODERATOR: Leah Barber, Director of Grassroots Advocacy, NORD

SPEAKERS:

• Alpa Khushalani, Duchenne Mom, PPMD Connect Coordinator, Gooseberry Research – VP Customer Success & Delivery
• Alison Leeds, Connecticut Ambassador, NORD Rare Action Network®
• Montrez Lucas, Director of Patient Engagement, NephCure

Explore NORD’s resources, policy priorities, and advocacy efforts. Learn how to share your rare stories and take action on pressing rare disease policies.

MODERATOR: Jake Saltonstall, Community Engagement Associate, NORD

SPEAKERS:

• Leah Barber, Director of Grassroots Advocacy, NORD
• Mason Barrett, Policy Analyst, NORD
• Kimberly Gonzalez, Patient, Advocate

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.

MODERATOR: Patrick Collins, Vice President of Community and Corporate Affairs, NORD

SPEAKERS:

• Kimberly A. Moran, PhD, MBA, CDP, Head, US Rare Diseases, UCB, Inc.
• Michael Kraft, MD FAAFP, CAQSM, DipABLM, Associate Chief Health Information Officer, Medical Director Virtual Care, Assistant Professor Family and Preventative Medicine, Emory SOM
• Nakisha Isom, Patient, Mother, Advocate, Author activist, and President of Living with Holt Oram syndrome

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

MODERATOR: Tiffany Sammons, Education Programs Manager, NORD, Rare Mama

SPEAKERS:

• Jorden Albright, Director, Rise Property Group, Advocate, Patient, Brother
• Dawn Laney, MS, CGC, CCRC, Associate Professor/Genetic Counselor, Director of the Emory Genetic Clinical Trial Center, LSDC Program Leader
• 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