Milestones Reached in 2014 & 2015


We are very proud of how far Utah Rare families have come in the last few years. Governor Herbert’s Rare Disease Day declaration, Senator Orin Hatch’s official support, and increased awareness in our globally shared mission is just starting to pick up steam.

Take a look back at some of the events from recent years and then join our journey by bookmarking or registering for activities planned in 2016.


Stay tuned for more upcoming events!

Looking back at the success in 2015…


3:00pm – 5:00pm
State Capitol Building, Rotunda
350 North State Street, Salt Lake City, UT 84114

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

miss Iron County at Utah Rare Day
2015 rare state house event

Rare Disease Day Symposium – Saturday, February 28th 2015


12:00pm – 5:00pm
University of Utah, Health and Science Education Building
26 South 2000 East, Salt Lake City, Utah 84112

The event is being modeled after the popular TED Talks series.

Speakers will have an average of 10 minutes to engage an audience comprising 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.

rare symposium
inspiration from man with rare disease
dr. ed clarck rare symposium

Utah RARE Symposium – Speaker Schedule

12:00pm – Registration
1:00pm – Welcome

DIAGNOSIS SESSION

  • Ed Clark, MD
  • Crystal Shearman
  • Reid Robison,PhD
  • Gholson Lyon, MD, PhD
  • Gina Szjanuk & Justin Zanik

2:00pm – TREATMENT SESSION

  • Kevin Jones, MD
  • Chris Gibson, PhD
  • Susie Wiet, MD
  • Robert Selliah, PhD

2:45pm – Break

3:15pm – PARTNERSHIP SESSION

  • Willard Dere, MD, FACP
  • Jason Shepherd, PhD
  • Cheryl Scacheri, MS, LGC
  • Fran Filloux, MD
  • Matthew Might, PhD

4:15pm – Panel Discussion
5:00pm – Closing