Utah Rare Disease Day: 2-day Event.


  • Salt Lake City

Utah Rare 2-day Event.

February 27th & 28th, 2015

February 27th 2015-State House Events

NORD is encouraging individuals to plan activities at their state capitol or state house to help raise awareness of rare diseases issues that are relevant at the state level. The purpose of the events are to raise awareness of rare disease issues among state legislators; patient organizations, medical professionals and companies work together to plan and organize these events.

Utah Rare Disease Day State House Event
Friday, February 27, 2015
State Capitol Building-Rotunda
350 North State Street, Salt Lake City, UT 84114
3:00pm-5:00pm
If you would like to register for this event, sign-up here.

Rare Disease Day-Utah State House 2015

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 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!

 

February 28th 2015: Rare Disease Day Symposium 1:00-5:00pm

University of Utah –  Health and Science Education Building

Salt Lake City, Utah

Schedule of events to come.

Sympoisium-Eventbrite Early Registration Now Open. See link below. Space is limited.

   https://www.eventbrite.com/myevent?eid=15097718683