Friday, February 27th 2015: Rare Disease Day State House Event
State Capitol Building, Rotunda
350 North State Street, Salt Lake City, UT 84114
Utah rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.
The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face.
Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Utah.
Educating state legislators and their staff members is extremely important and we are thrilled that you have decided to participate!
State House Event-Speaker Schedule
3:00 PM WELCOME
-Dr. Dean Li, University of Utah Healthcare
-Paul Melmeyer, National Organization for Rare Disorders
-Mike Mower, Governor Herbert’s Office
-Ryan Wilcox, US Senator Mike Lee’s Office
-Anne Bruns, The Atypical HUS Foundation
-Curt Bramble, Utah State Senate
-Dr. Michael Paul, Lineagen
-Season Atwater, Aware of Angels
-Cheryl Scacheri, GeneDx
-Katie Nuffer, Rare Patient
-Gage Froerer, Utah State House of Representatives
-Tami Jensen, Rare Parent
5:00 PM Closing
Saturday, February 28th 2015: Rare Disease Day Symposium
University of Utah, Health and Science Education Building
26 South 2000 East, Salt Lake City, Utah 84112
The goal of the Rare Disease Day Symposium is to inspire, motivate, and spark collaboration among the many rare disease stakeholders — patients, healthcare providers, researchers, companies, institutions, legislators — in our wonderful state.
The event is being modeled after the popular TED Talks series.
Speakers will have an average of 10 minutes to engage an audience comprised of patients, families, legislators, medical students, health care providers, researchers, administrators, industry representatives, and more, on the topics of diagnosis, treatment and support.
The event will be live-streamed and recorded.
Utah Rare Symposium-Speaker Schedule
12:00 PM REGISTRATION
1:00 PM WELCOME
DIAGNOSIS SESSION
-Ed Clark, MD
-Crystal Shearman
-Reid Robison,PhD
-Gholson Lyon, MD, PhD
-Gina Szjanuk & Justin Zanik
2:00 PM TREATMENT SESSION
-Kevin Jones, MD
-Chris Gibson, PhD
-Susie Wiet, MD
-Robert Selliah, PhD
2:45 PM BREAK
3:15 PM PARTNERSHIP SESSION
-Willard Dere, MD, FACP
-Jason Shepherd, PhD
-Cheryl Scacheri, MS, LGC
-Fran Filloux, MD
-Matthew Might, PhD
4:15 PM PANEL DISCUSSION
5:00 PM CLOSING