Rare Disease Day
February 28, 2014
Time: 3 p.m. - 5 p.m.
Location: Utah State Capitol
Address: 350 North State Street, Salt Lake City, UT 84114
The event will begin at 3 p.m. in the Hall of Governors.
This event is open to the public.
Click here to download the press release.
Click here to learn more about Rare Disease Day and find an event near you.
Rare disease patients, caregivers and other health careadvocates come together on Friday, February 28, 2014, to observe Rare Disease Day in Utah. Rare Disease Day occurs each year on the last day of February, and on this day, millions of patients and their families will share their stories to focus a spotlight on rare diseases as a global public health concern. The day is observed in more than 70 nations.
Our Foundation has joined with the National Organization for Rare Disorders (NORD), the national sponsor of the day in the US, 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 diseasesare 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.