RUN’s 2018 Rare Disease Day events were incredible! Thank you to the Rare Disease Legislative Advocates and the EveryLife Staff for allowing me to share our journey and to raise awareness for undiagnosed rare diseases. It was such an honor to speak at the Rare Disease Congressional Caucus Briefing today in Washington D.C. Thank you to my husband Justin Zanik for being there to support me today! It meant more than you will ever know! Thank you to everyone working hard today to raise awareness for the entire rare and undiagnosed community! There so much work to be done and collaboration is the key!

Link to Livestream of Gina Szajnuk’s Speech

Link to Full Livestream from the Rare Disease Congressional Caucus Briefing

Thank you to Utah Rare! Watch the National Organization for Rare Disorders, Inc. (NORD) Utah Rare Action Network’s State House Event!! Ava Szajnuk spoke today! Thank you Season Atwater for livestreaming the event and for your incredible photography project! Thank you Julie A. Potter Jennifer Christensen Summers Kristen Angell – nord for all of your hard work! Great job everyone! So very proud and honored to be a part of such an incredible rare and undiagnosed community!

Link to Livestream of Ava Szajnuk’s Speech!

Link to Full Livestream from the State House Event!

Much love, Gina and Justin Zanik

#ShowYourRare #RareDiseaseDay
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