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 opporutnities to learn together, support each other, connect with resources and network. Enjoy some┬áhors 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.

Symposium Agenda (subject to changes)

11:30-12:30 Registration and┬áhors d’ oeuvres

12:30-12:45 Welcome

12:45-1:15 Intentional Networking

1:15-1:30 Break

1:30-2:45 Breakout Sessions

Undiagnosed- Genetics 101

After the Diagnosis: Rare and Ultra Rare

2:45-3:00 Break

3:00-4:00 Advocacy Panel

4:00-4:45 Resources

4:45-5:00 Closing

Contact Tristin West at [email protected] with any questions, to sponsor the symposium or to reserve a table for your organization/group/company/foundation.

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About the author


Gina began working tirelessly as an advocate for the rare and undiagnosed diseases community several years ago after her and her family moved to Utah. She is the Co-founder and Executive Director of the Rare and Undiagnosed Network (RUN), Chair of Utah Rare, and Utah Ambassador for National Organization on Rare Diseases (NORD).

Gina is currently undiagnosed and the mother of three children with an undiagnosed genetic dysfunction. She is advocating for clinical whole genome sequencing covered by insurance companies and hopes to help rare and undiagnosed families emotionally and financially.

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