February 16, 2018
Governor Herbert Declarations:
Rare Disease Day on February 28th
Undiagnosed Rare Disease Day on April 29th
Park City, Utah. (February 16, 2018) – Rare and Undiagnosed Network (RUN), a rare and undiagnosed disease patient advocacy organization, and the rare disease community of more than 350 million people worldwide, are preparing for a special upcoming few months of celebrations in honor of the rare and undiagnosed community. In addition to nationwide events, this year RUN has signed up with Global Genes and the Festival of Children Foundation to create the first-ever RARE Carousel of Possible Dreams. The inaugural fundraising event will be held February 28, 2018 in San Francisco, at the Children’s Creativity Museum, and will provide a unique opportunity for the more than 30 participating rare disease foundations to raise awareness and funds for rare diseases nationwide. RUN’s funds will go directly to rare and undiagnosed families to help pay their medical bills, medical travel bills as well as to have genetic sequencing. RUN’s Co-founder, Gina Szajnuk (Zanik), is married to the Assistant GM of the NBA Utah Jazz, Justin Zanik. They have three children that suffer from an undiagnosed rare disease and have lived in a diagnostic odyssey for over five years. Please learn more about their journey. Link to RUN’s RARE Carousel of Possible Dreams.
During the upcoming months, RUN and rare disease advocates worldwide will host awareness and fundraising events for the more than 7,000 rare diseases worldwide. February 28th is the official Rare Disease Day trademarked by Eurordis with the National Organization for Rare Disorders (NORD) being the United States sponsor. Their Utah event will be at the State Capitol.
UPCOMING EVENTS:
Utah Rare Action Network Advocacy Event
National Organization Rare Disorders (NORD) Sponsored Event
February 28, 2018 at 3:00pm- 5:00pm Utah State Capitol, 350 State Street, Salt Lake City, Utah 84111 Rare Disease Day is an annual awareness day that is dedicated to raising public understanding of rare diseases and celebrated on the last day of February in over 85 nations around the world. This event is an opportunity for you to hear from elected officials, patients, caregivers, medical professionals, researchers, and industry representatives about rare diseases and the daily challenges many patients and their families face here in Utah– Utah State Ambassadors for NORD are Julie Potter and Jennifer Summers. Gina is the Undiagnosed Advocacy Ambassador for NORD
Also, on February 28th , Gina will be speaking at the Rare Disease Congressional Caucus Briefing: Rare Disease Week on Capitol Hill through the Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. Their ten-year-old daughter, Ava, will be speaking at the NORD State House event here.
Season Atwater, www.awareofangels.org, will be displaying her new Utah Rare Photography Project this month. Her participants are all adults living with a rare or undiagnosed rare disease.
Utah Rare Symposium
Saturday, March 3, 2018 at 11:30am – 5:00pm
Marriott Hotel
480 Wakara Way
Salt Lake City, UT 84108
We invite patients, parents, researchers, clinicians, and advocates to join us for our annual Utah Rare Symposium on Saturday, March 3, 2018. Adults, children and families are all invited to attend. Our symposium provides opportunities to learn together, support each other, connect with resources and network. Enjoy some hors d’ oeuvres and register on site for FREE in between 11:30am and 12:30pm. Registration includes free T-shirts for attendees. Various sizes will be available on a first come first served basis. Utah Rare Chair: Tristin West & Utah Rare Executive Committee: Season Atwater, Anne Bruns and Gina Szajnuk
Utah Jazz vs. Sacramento Kings
Saturday, March 17, 2018 at 7:00 PM
Vivint Smart Phone Arena Address:
301 S Temple, Salt Lake City, UT 84101
The Utah Jazz will honor 30 rare and undiagnosed children and their siblings on the court as National Anthem Buddies! Danté Exum has donated 50 tickets through the NBA Player Ticket Donation Program!
Undiagnosed Rare Disease Day
#UndiagnosedDay
Sunday, April 29, 2018
The campaign targets primarily the general public and also seeks to raise awareness among policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in undiagnosed rare diseases and the world of genetics. Since 80% of rare and undiagnosed rare diseases have identified genetic origins, it is imperative to raise awareness for the importance of genetics in the diagnostic odyssey of undiagnosed rare disease patients.
About RUN
RUN stands for Rare & Undiagnosed Network. We’re a group of advocates, patients, families, researchers, healthcare providers who share the same mission: To empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.
Media Contact
Rare and Undiagnosed Network (RUN): Gina Szajnuk (Zanik), (310) 883-4353, [email protected]
