Saturday, February 27th, 2016. This day will live in my heart forever.

Utah Rare’s 2nd Annual Symposium and the Utah Jazz game surpassed my expectations by far!

IMG_0174The Utah Rare community is beyond special.

Words cannot express my gratitude to ALL of you for your support of Utah Rare.

Every single member of Utah Rare is such an inspiration!

My heart overflowed from the love that surrounded all of us yesterday.

It was such an honor to be in the room with all of you!


 We are growing our Utah Rare family and it is such a powerful journey to be on with all of you.


2016 Rare Disease Day tomorrow is going to be incredible!


Thank you all for sharing on social media! Let’s keep it going!!


We need to raise more awareness tomorrow!

Reach out to as many people tomorrow to tell them about Rare Disease Day and what Utah Rare is all about.


Brothers. Sisters.


We are ALL in this together.




Love you all.

My Utah Rare Family.

Thank you to all of the volunteers that helped set up and take down the symposium.

Thank you to Season Atwater for her incredible Rare Teen Photo Project.

Thank you to all of the Rare Teens for hanging out all day and for standing on the court of the Utah Jazz for the National Anthem.  

Thank you to every single family that attend the symposium and the Jazz game. 

Thank you to all of the speakers for taking the time out of their weekend to give their talks. Every speaker was an inspiration to our rare community!  

Thank you to all of the sponsors for your generosity and your support. We could not have done this amazing symposium yesterday with all of you!

Thank you to everyone that set up a table. I appreciate it more than  you know!!

Thank you to my mentor, Cristina Might , for being such an inspiration to all of us and creating Utah Rare.

Thank you to everyone on the Executive Committee that helped get Utah Rare in place.

Thank you to Ecosyse for all of their time dedicated to Utah Rare. 

Thank you to the Utah Jazz for everything last night from the National Anthem Buddies to the 180 tickets! Go Jazz!!

We are not done! We have a big day tomorrow and let’s RAISE SOME RARE DISEASE DAY AWARENESS!!!!

I am in awe of Utah Rare and what it has become.

Much love and appreciation to every single person involved in Utah Rare.  

Thank you for your continued love and support of our family and of our journey.

We are family. Utah Rare.

gina szajnuk

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.

Leave a Comment