Registration now open for the Utah Rare Events State House Event-February 27th, 2015 Symposium-February 28th, 2015   ~  Links Below


Deadline for speaker nominations is December 17, 2015.  Speaker nominations are closed.
Deadline for exhibitor registration is February 7, 2015.  Spaces are limited!

We encourage denim attire (jeans for genes) at all events.

Friday, February 27th 2015: Rare Disease Day State House Event

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

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!

Saturday, February 28th 2015: Rare Disease Day Symposium

12:00pm – 5:00pm
University of Utah, Health and Science Education Building
26 South 2000 East, Salt Lake City, Utah 84112
Register HERE.  Seating is limited!  

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.

Confirmed speakers include:

  • Dr. Dean Li, Associate Vice President for Research and Chief Scientific Officer for University of Utah Health Sciences
  • Dr. Ed Clark, Chief Medical Officer of Primary Children’s Hospital and Chair of Pediatrics
  • Dr. Kevin Jones, Professor and Author of “What Doctors Cannot Tell You”
  • Dr. Gholson Lyon, Cold Spring Harbor Laboratory and Utah Foundation for Biomedical Research
  • Dr. Reid Robison, Chief Executive Officer of Tute Genomics
  • Dr. Robert Selliah, Chief Executive Officer of American Med Chem
  • Dr. Christopher Gibson, Chief Executive Officer of Recursion Pharmaceuticals
  • Crystal Shearman, producer of “Undiagnosed: Medical Refugees” film
  • Amylynne Santiago Volker, Rare Advocate and mother of Nicholas Volker
  • Gina Szjanuk, Founder of Rare and Undiagnosed Network
  • Season Atwater, Founder of Aware of Angels

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