2017 Events

Please join us for the 2017 Rare Disease Day Events in Utah!

Event Information

Utah Rare Disease Day State House Event at Utah State Capitol Rotunda

350 State St, Salt Lake City, Utah 84111


Tue, February 28, 2017

3:30 PM – 5:30 PM MST

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. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in Our Very Great State of Utah.

Register Here: https://www.eventbrite.com/e/utah-rare-disease-day-state-house-event-tickets-31868079283?utm_source=eb_email&utm_medium=email&utm_campaign=order_confirmation_email&utm_term=eventname&ref=eemailordconf

Utah Rare Symposium


Sat, March 4, 2017

1:00 PM – 5:00 PM MST

Salt Lake City Marriott University Park

480 Wakara Way

Salt Lake City, UT 84108

Please join us for our 3rd annual Utah Rare Symposium. We have an incredible day planned for you- bringing you together with other rare families, clinicians and resources for finding support and living with a rare or undiagnosed disease. Registration is now open and seating is limited. Our session will end with a book signing with Jason and Heather Hansen, parents of the beautiful Kennedy Hansen. The first 15 registrants will receive a free copy of the book, Kennedy’s Hugs. (one per family)

Saturday, March 4, 2017

Check in: 1:00 pm – All attendees who register before February 10th will receive a Utah Rare tote bag (one per family).

Symposium 2-4pm

4-5pm Book signing and social hour with light refreshments

Thank you for all the support you have shown us over the years. We can’t wait to see you again this year!

Some of our topics will include:

Genetic Testing: What will it tell me?
How to Create a Care Team for Patient
From Bench to Bedside: How are medicines created
How to talk to children and teens about their health
The importance of creating a family history of health
Managing your relationship during a medical journey
Sharing Your Story