Celebrating our Undiagnosed Rare Disease Awareness Ribbon – created by Ava Szajnuk & designed by Erica Braymen in 2016
Undiagnosed Rare Disease Awareness Ribbon (2016):
RUN’s first #UndiagnosedDay was on April 29th, 2016! We created the Undiagnosed Awareness ribbon from Ava Szajnuk’s drawing. Ava was eight years old at the time and an undiagnosed rare disease patient. Her brother, Oskar, and her sister, Lucy, are also undiagnosed rare disease patients.
Since zebras represent the rare community, we envisioned having a zebra ribbon like the Rare Disease Awareness ribbon but added baby blue and baby pink colors to it.
Erica Braymen designed the ribbon at Ecosyse. Together, we brought it to life!
It has been celebrated all over the world on #UndiagnosedDay!
Undiagnosed community is a part of the rare community, but they stand alone as well.
All rare diseases were once Undiagnosed.
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𧏠350 million people live with an undiagnosed disease worldwide.
𧏠Genome sequencing can provide answers for 40% of children and adults with undiagnosed diseases, but around 60% still don’t receive a diagnosis.
𧏠75% of undiagnosed patients are children.
Undiagnosed Day is celebrated every year on April 29th!
The Undiagnosed Awareness ribbon has been shared globally to raise awareness for the undiagnosed rare disease community!
2025 Undiagnosed Rare Disease Day #UndiagnosedDay
2024 Undiagnosed Rare Disease Day #UndiagnosedDay
2023: Undiagnosed Rare Disease Day #UndiagnosedDay
2022 Undiagnosed Rare Disease Day #UndiagnosedDay
2020: Undiagnosed Rare Disease Day #UndiagnosedDay
2019: Undiagnosed Rare Disease Day #UndiagnosedDay
The Undiagnosed Rare Disease Awareness ribbon was recognized by the National Organization for Rare Diseases (NORD)
2018: The Undiagnosed Rare Disease (#UndiagnosedDay)
The Undiagnosed Disease Network (UDN) shared about RUN’s Undiagnosed Rare Disease Day back in 2018!
Photo by AnahĂ Mackarena Chacana Maldonado, AsociaciĂłn Chilena de ColagenopatĂas tipo II, Chile
Photo by Yana Prints Neglected Diseases Collaboration, Israel
Photo by Sergio Ziggiotto, Universal Mankind
Photo by Alessia Torregrossa, Finestre di Assisi/Windows of Assisi
Photo by Finestre di Assisi/Windows of Assisi
Photo by Rare Disease Ghana Initiative
Photo from Eleonora Passeri and Universal Mankind from Camilla Gubbiotti
RUNâs Mission: RUN stands for the Rare & Undiagnosed Network. Weâre 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!
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 motherâs unrelenting crusade to help those trapped in the wilderness of the undiagnosed â by Lee Benson
To Read: âWhat is the hardest part of being undiagnosed?â by Gina Szajnuk
To Read: âUndiagnosed is a Diagnosisâ by Ava and Gina Szajnuk
To Read: The Szajnuk Journey
To Read: âPush Throughâ by Ava Szajnuk
To Listen: RARE Cast by Global Genes: âA Young Rare Disease Advocate Discusses Life with an Undiagnosed Conditionâsease Advocate Discusses Life with an Undiagnosed Conditionâ
More Media:
To Read: How Utah Jazz GM Justin Zanik found himself fighting for not just his team, but his life â ESPN
To Listen: ESPN Daily: How a Familyâs Bond Saved the Jazz GM
To Watch: Fox 13 News âUndiagnosedâ
To Watch: RUNâs Two Year Anniversary Video by Small Forces
To Watch: RUNâs One Year Anniversary Video
To Watch: #UndiagnosedDay RUNâs 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 â 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 RUNâs 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 â Madison.
(Photo by Season Atwater Photograph)