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

Speaker: Jonathan Cottor, CEO/Founder, National Center for Pediatric Palliative Care Homes, Rare Caregiver

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.

Moderator: Marybeth McAfee, Vice President of Community & Medical Affairs, NORD

Speakers:

• Vinodh Narayanan, MD, Child Neurologist, Arizona Pediatric Neurology & Neurogenetics Associates (APNNA)
• Stephanie Rankin, Patient Advocate; Rare Caregiver; Customer Advocate Team Lead, DNM1
• Taejeong (TJ) Song, PhD, Assistant Professor, Department of Cell and Molecular Medicine, University of Arizona College of Medicine

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

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.

Moderator: Taylor Vaughn, MS, CGC, Phoenix Children’s Hospital

Speakers:

• Melissa Meyer, DNP, PMHNP-BC, Doctor of Nursing Practice, Psychiatric Mental Health Nurse Practitioner, Arizona State University; Grossman & Grossman; Stiff Person Syndrome
• Keri Ramsey, MS, CGC, RN, Department of Clinic Genomics, Mayo Clinic
• Tabby Wallace, Rare Caregiver, Fly Little Bird Foundation

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