One in ten people in the United States have a rare or undiagnosed disease. In Utah, there are about 310,000 people that are part of this community. Rare Disease Day takes place on the last day of February every year to celebrate with these individuals and recognize them. This year, that day falls on Wednesday, Feb. 28.
First held in 2008 in Europe, this special day has since been observed by many more countries, including the United States. This year, Aware of Angels and the Rare and Undiagnosed Network (RUN) are partnering to present two special events this week to celebrate the rare and undiagnosed community in the state of Utah, as well as the 350 million other people worldwide.
Aware of Angels and RUN have come together and planned three events for everyone throughout the state of Utah. The first event is the Utah Rare Action Network Advocacy Event at the Utah State Capitol on Wednesday, Feb. 28 from 3 to 5 p.m. This is an event where people from the community can hear from elected officials, patients, caregivers, medical professionals and more about rare diseases and the daily challenges many patients and their families face here in Utah.
The second event the organizations have planned is the Utah Rare Symposium on Saturday, March 3 from 11:30 a.m. to 5 p.m. The event will be hosted at the Marriott hotel in Salt Lake City. At this event, patients, parents, researchers, clinicians and advocates are invited to attend, where opportunities to learn together and support one another will arise.The chance to connect with resources and networks will also be provided. Those who wish to attend can register online at https://utahrare.org/utah-rare-symposium-2018/.
The third and final event will be at the Utah Jazz game on Saturday, March 17 at Vivint Smart Home Arena. Before the Jazz take on the Sacramento Kings, 30 rare and undiagnosed children and their siblings will be on the court as National Anthem Buddies. This event is part of the RUN’s NBA Initiative, which grew in 2017 to include the Milwaukee Bucks, the Phoenix Suns, the Washington Wizards and the Boston Celtics. To read more about the initiative, please visit https://rareundiagnosed.org/run-nba-initiative-rare-undiagnosed-network/.
There are quite a few people that are members of the rare and undiagnosed community that reside in the Castle Country. This day is to celebrate them and remind them that they are not alone. To read more about the Aware of Angels and RUN organizations, please visit www.awareofangels.org and www.rareundiagnosed.org.