Undiagnosed Day is today! April 29th, 2016 #UndiagnosedDay
What does “Undiagnosed” mean?
“An undiagnosed disease is a medical condition without a known cause despite a lot of evaluation.” Undiagnosed Disease Network UDN
What is Undiagnosed Day?
Undiagnosed Day takes place on the last Friday of April each year. The main objective of Undiagnosed Day is to raise awareness among the general public and decision-makers about undiagnosed diseases and their emotional, physical and financial impact on the lives of the patients and their families.
The campaign targets primarily the general public and also seeks to raise awareness among policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in undiagnosed diseases and genetics. Since 80% of rare and undiagnosed diseases have identified genetic origins, it is imperative to raise awareness for the importance of genetics in the diagnostic odyssey of undiagnosed patients.
#UndiagnosedDay
RUN created the Undiagnosed ribbon from Ava Szajnuk’s drawing. Ava is eight years old and an undiagnosed rare disease patient. Since zebras represent the rare community, we envisioned having a zebra ribbon with baby blue and baby pink colors added to it. Erica Braymen designed the ribbon at Ecosyse and turned the ribbon into the first Undiagnosed Rare Disease Awareness Ribbon!
Undiagnosed community is a part of the rare community, but they stand alone as well.
All rare diseases were once Undiagnosed.
Help us raise awareness for Undiagnosed Day on April 29, 2016.
Thank you for your continued support of the Undiagnosed community.
Please email ginaszajnuk@gmail.com if you would like to join our Undiagnosed Alliance.
RUN’s Mission: RUN stands for the Rare & Undiagnosed Network. We’re a group of advocates, patients, families, researchers, and healthcare providers who share the same mission and vision: To empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.
A special thank you to Small Forces Productions for donating our Undiagnosed Rare Disease Day video.
If you have undiagnosed disease statistics to share, please email them to ginaszajnuk@gmail.com!
Please reach out to your local media to share your undiagnosed rare disease journey! We want to raise as much awareness that we can for our undiagnosed community!
Contact information: Gina Zanik (Szajnuk)
Co-founder and Executive Director, Rare and Undiagnosed Network (RUN)
Vice Chair, Utah Rare Disease Advisory Council (RDAC)
W www.rareundiagnosed.org
E ginaszajnuk@gmail.com P (310) 883-4353
To Read: A mother’s unrelenting crusade to help those trapped in the wilderness of the undiagnosed – by Lee Benson
To Read: “What is the hardest part of being undiagnosed?” by Gina Szajnuk
To Read: “Undiagnosed is a Diagnosis” by Ava and Gina Szajnuk
To Read: The Szajnuk Journey
To Read: “Push Through” by Ava Szajnuk
To Listen: RARE Cast by Global Genes: “A Young Rare Disease Advocate Discusses Life with an Undiagnosed Condition”sease Advocate Discusses Life with an Undiagnosed Condition”
More Media:
To Read: How Utah Jazz GM Justin Zanik found himself fighting for not just his team, but his life – ESPN
To Listen: ESPN Daily: How a Family’s Bond Saved the Jazz GM
To Watch: Fox 13 News “Undiagnosed”
To Watch: RUN’s Two Year Anniversary Video by Small Forces
To Watch: RUN’s One Year Anniversary Video
To Watch: #UndiagnosedDay RUN’s 2016 Video
About
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 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 serves as the Vice-Chair of the Utah Rare Disease Advisory Council (RDAC). She is a member of the Undiagnosed Disease Network International (UDNI). 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.
(Photo by Season Atwater Photograph)