2016 Utah Rare Disease Day Events are NOW OPEN for REGISTRATION on our NEW Utah Rare website!

As the Utah State Ambassador for the National Organization for Rare Disorders (NORD), it is an honor to be the 2016 Utah Rare Committee Chair.  I cannot thank Cristina Might enough for her dedication and vision for the 2015 Utah Rare Disease Day events. Thank you for being my mentor and my rare sister. Thank you to Season Atwater and Anne Bruns for all of your time and hard work last year on the Utah Rare Executive Committee. Thank you to ALL of the volunteers last year that made the events such a success!  

Thank you to Robert Selliah, founder/CEO of American MedChem, for organizing the very first Utah Rare Disease Day State House Event sponsored by NORD in 2014!  

I am already blown away by the dedication of our volunteers this year for Utah Rare.

Thank you to Ecosyse, PJ Coleman and Peter Busch, for building our new Utah Rare site.

Thank you to ALL of our sponsors already committed to our 2016 events. The events are currently sponsored by NORD, The Larry H. & Gail Miller Family Foundation, The University of Utah, Intermountain Healthcare Primary Children’s Hospital, NGLY1, Utah Jazz, Alexion, Ecosyse, Rare & Undiagnosed Network (RUN), Aware of Angels, Tute Genomics, American MedChem, Recursion Pharmaceuticals, Tres Hombres Mexican Grill & Cantina, Undiagnosed Film & Utah Food Allergy Network. We welcome more sponsors!

We welcome more organizations and nonprofits to register for our events. Recursion Pharmaceuticals has generously donated 27 table seats that are currently waiting to be filled!

Thank you to all of the members of our growing Utah Rare Committee.  We welcome everyone to join our Utah Rare family!

• Gina Szajnuk, 2016 Utah Rare Committee Chair
• Cristina Might, 2016 Executive Committee and 2015 Utah Rare Committee Chair
• Chris Gibson, 2016 Utah Rare Committee Vice Chair
• Season Atwater, Utah Rare Executive Committee
• Gray Petty, Utah Rare Executive Committee
• Anne Bruns, 2016 Utah Rare Sponsor Chair
• Emily Coonrad, Utah Rare Program Chair
• Commissioner Stan & Jen Summers, Utah Rare State House Event Chairs
• Peter Busch and PJ Coleman, Utah Rare Marketing Chairs
• Tristan West, Utah Rare Social Media Chair
• Julie Potter, Utah Rare Outreach Chair

Saturday, February 27, 2016

2nd Annual Utah Rare Disease Day Symposium

1:00 PM – 5:00 PM at the Salt Lake City Marriott on the University Utah campus

A TED-style event to inspire, motivate, and spark collaboration among the rare disease stakeholders — patients, healthcare providers, researchers, companies, institutions, legislators — in our state. Registration required.  300 person capacity.  Event will be live streamed and recorded for distribution.  

For Children: In partnership with RUN, Utah Rare, and NORD, the University of Utah will host a free Education Room at the Marriott. Fun, educational activities for all ages – including a chance to touch real human brains – will teach about health, medicine, and research. Sponsored by the University of Utah Neuroscience Initiative at the University of Utah.

 

NBA Utah Jazz game against the Brooklyn Nets

7:00 PM – Vivint Smart Phone Arena

Thirty children with rare conditions will be on the court for the National Anthem, while 120 tickets have been donated by the Utah Jazz Player Programs for their families and others in the rare community. (Tickets by invitation only for the families of the 30 children standing on the court and for volunteers of Utah Rare) 

 

 

Monday, February 29, 2016

Utah World Rare Disease Day Statehouse Event  

3:00 PM – 5:00 PM at the Utah State Capitol Building Rotunda.

An event for patients, caregivers, legislators, and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Utah. Registration requested but please feel free to join us either way!  1,500 person capacity.

Utah Rare Dinner

6:00 PM – 9:00PM @ Tres Hombre

 

 

My heartfelt thank you to all of my family and friends for your continued support.

Much love,

Gina