Ep. 9: Gina Zanik on Undiagnosed Day (April 29) and the Challenges Faced by Patients
In this episode, VibeCast host Ray Dogum speaks with Gina Zanik, Co-Founder and Executive Director of Rare and Undiagnosed Network. Gina Zanik (Szajnuk) started her career in the entertainment industry. She worked in Hollywood for over ten years. She supported movie directors, producers, actors, literary agents and executives. She entered the world of the NBA and NFL and served as Director of Client Services and Executive Assistant to the CEO at Priority Sports & Entertainment in Chicago. She supported the President of Basketball Operations at U1st Sports, an NBA and European basketball agency. She worked in corporations supporting VP, President, and CEO level executives for five years in Los Angeles and Manhattan. She now serves as the Co-founder and Executive Director for the Rare and Undiagnosed Network (RUN), a 501©3 nonprofit organization in Salt Lake City formed in 2014. Her three children, each of whom live with a chronic, invisible, and undiagnosed rare disease, continue to inspire, and motivate her to empower patients and their families with genomic information and community through advocacy, networking, and support. Gina is also living with a chronic, invisible, and undiagnosed rare disease. She is the Vice-Chair of the Utah Rare Disease Advisory Council (RDAC). She is a Board Member of the Metrodora Institute’s Foundation. She is a member of the Undiagnosed Disease Network International (UDNI). She serves as a Patient Advocacy Advisor on RARE-X. In 2016, Gina was the Chair of Utah Rare and was on the Executive Committee for four years. Gina continuously works to build a network of rare advocates, geneticists, researchers, specialists, and volunteers who can come together under one platform. In 2016, RUN started the international Undiagnosed Rare Disease Day (Undiagnosed Day) awareness campaign on April 29th. She was a member of the Participant Engagement and Empowerment Resource (PEER) of the Undiagnosed Diseases Network (UDN) for two years. She served as the National Organization for Rare Disorders (NORD) as their Utah State Ambassador and then as their Undiagnosed Advocacy Ambassador for four years. She is a public speaker and published writer. In 2016, Gina won the Rare Voice Award from the EveryLife Foundation for Rare Diseases as well as accepted the Rare Champion of Hope – Advocacy Award from Global Genes. She is married to Justin Zanik, the NBA Utah Jazz General Manager. Gina has brought awareness to the public about the importance of undiagnosed and rare diseases through RUN’s NBA Initiative started in 2015. She was born and raised in Madison, WI. She graduated with a Bachelor of Arts from the University of Wisconsin – Madison. VibeCast is a collection of long-form and short-form video content intended to help our community learn about the current opportunities and challenges in biotech fundraising and community engagement innovation. Guests will include biotech founders, regulatory experts, drug development executives, blockchain technologists, web3 community builders, patient community advocates, and many other Vibe Bio community members seeking to accelerate the development of breakthrough treatments. Follow Vibe Bio's Socials:
Disclaimer: VibeCast is intended to be used for educational and entertainment purposes, and no information or opinions shared constitute advice or services. While guests are invited to listen, listeners acknowledge they are not being provided professional advice from the podcast or the guests. The podcast is for private non-commercial use and guests do not necessarily reflect any agency, organization, or company that they work for.
