Sanford Rare Disease Symposium

Sanford Research and the Coordination of Rare Diseases at Sanford are proud to host the annual Sanford Rare Disease Day in honor of Global Rare Disease Day. The goal of the Sanford Rare Disease Symposium is to raise public awareness of the importance of rare disease research and provide information to scientists and healthcare providers.

Friday, February 23, 2018
8:00 a.m. – 4:30 p.m.
Pre-registration required by February 16, 2018
For questions, please contact cords@sanfordhealth.org

Register for the event

Topics and speakers at the 8th Annual Rare Disease Symposium include:

Rethinking the Nonprofit Foundation: An Emerging Niche in the Rare Disease Ecosystem
Annette Bakker, PhD
President CSO, Children’s Tumor Foundation
Jill Weimer, PhD
Senior Director of Therapeutic Development, Sanford Research

On the Move for a Cure: Accelerating Research in Primary Ciliary Dyskinesia (PCD)
Michele Manion
Executive Director, PCD Foundation

Selective Neuronal Vulnerability: Lessons From Dystonia
William T. Dauer, MD
University of Michigan

BioID: A Response to Barriers in Understanding the Mechanisms of Rare Diseases
Kyle Roux, PhD
Associate Scientist, Enabling Technologies Group, Sanford Research

Understanding the Brain Circuitry Underlying Behavioral Symptoms – Fetal Alcohol Spectrum Disorder
Verginia C. Cuzon Carlson, PhD
Assistant Professor, Division of Neuroscience, Oregon National Primate Research Center

Discovering New Genetic Syndromes at the NIH Clinical Research Center: Carney-Stratakis Syndrome, 3PAS, iMAD, X-LAG and Others
Constantine A. Stratakis MD, D(med) Sci
National Institute of Child Health and Human Development National Institutes of Health

Alagille Syndrome, Cystic Kidney Disease and Kidney Collecting Duct Disorders
Kamesh Surendran, PhD
Associate Scientist, Pediatric and Rare
Diseases Group, Sanford Research

Mike Porath
CEO and Founder of The Mighty