Gina szajnuk 
Gina Szajnuk was born and raised in Madison, Wisconsin. She serves as the Co-founder and Executive Director for the Rare and Undiagnosed Network (RUN), a 501©3 nonprofit organization. Her three children, each of whom live with a rare and undiagnosed disease, continue to inspire and motivate her to empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.  Gina is also undiagnosed and is the Undiagnosed Advocacy Ambassador for the National Organization for Rare Disorders (NORD). In 2016, Gina was the Chair of Utah Rare and made Utah the #1 state for Rare Disease Day. Gina continuously works to build a network of rare advocates, geneticists, researchers, specialists, and volunteers who can come together under one platform.  She is currently working to launch, as the Co-founder, a new platform, RUNmyDNA.com.  She is married to Justin Zanik, the NBA Utah Jazz Assistant General Manager. Through her husband’s position in the NBA, Gina has brought awareness to the NBA about the importance of rare and undiagnosed diseases. 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 graduated with a Bachelor of Arts from the University of Wisconsin – Madison.
  • LinkedIn - White Circle

The Rare Advocacy Movement (RAM) is a patient advocacy initiative focused on documenting the evolving complex structure and unique dynamics of the rare disease patient advocacy landscape. RAM serves as a Center of Insight (COI) for those interested in participating in collaborative patient advocacy initiatives and working groups within the rare disease industry. The RAM membership is comprised of a network of patient advocacy professionals that have vowed to abide by the established Code of Conduct for Membership.